Inclusive and Supportive Education Congress
International
Special Education Conference
Inclusion: Celebrating Diversity?
1st - 4th August 2005. Glasgow, Scotland
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Inclusive and Supportive Education Congress 1st - 4th August 2005. Glasgow, Scotland |
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Maria Inês Bacellar Monteiro*, Ana Paula de Freitas*, Maria Natália Mesquita de Farias**, Evani Amaral Camargo*
mbmontei@unimep.br
*Universidade Metodista de Piracicaba
**Pontifícia Universidade Católica de Campinas
Abstract
The inclusion of children with special needs in mainstream schooling is a challenge for special education all over the world. According to Brazilian educational policy the attendance at mainstream schools by children with special needs is ensured in the majority of circumstances. Meanwhile, only a few pupils with special needs have the opportunity to attend regular classes, and even when they have this opportunity, the schools and/or the teachers generally have insufficient resources and knowledge to ensure the success and staying power of these pupils. The lack of resources ends up promoting frustration on the part of the pupil and his/her parents and without doubt contributes to the marginalization and removal of the pupil from mainstream school. We have witnessed a great deal of effort on the part of the schools, teachers and public institutions aimed at ensuring the right of children with special needs to attend mainstream school, but we need renewed effort in this direction in order to change the present situation. Is the educational and social inclusion of anybody with special needs really possible? What are the attitudes and efforts that could contribute to the inclusion of these people in regular schools? Guided by these questions we embarked upon a study of children and young people diagnosed as having mental deficiencies. They were attending public and private schools in two towns from the interior of the state of Sao Paulo, Brazil. Data was obtained from interviews with pupils, parents and teachers. The results demonstrated that pupils with deficiencies took part in school activities more as observers of interactions between the other pupils than as active participants. They also played mostly alone, rather than in groups or in twos. The teachers, even when willing to help, demonstrated, on many occasions, that they didn’t understand their role as a promoter of interactions and, frequently, they only observed what was happening. They showed concern about the pupil with mental disability but they didn’t feel equipped to actively help with the child’s development. They had too many pupils in the classroom and couldn’t give individual attention to the pupil with disability. Some positive aspects were also observed, for example: the acceleration of language development, greater incorporation of social rules, and a higher degree of independence. Parents showed satisfaction in seeing their children included in mainstream school but pointed out constant difficulties related to acceptance of their child by the other pupils and by the parents of these other pupils. They also displayed considerable concern about their child’s future. The pupils with disabilities described some difficulties in making friends and complained about loneliness and lack of activities. The results of this study allowed us to reflect upon the role of education in building the social conceptions that will permit the social inclusion of mentally disabled persons.
Introduction
The inclusion of children with special needs in mainstream schooling presents a challenge for special education all over the world. According to Monteiro (1997):
“According to Brazilian educational policy the attendance at mainstream schools by children with special needs is ensured in the majority of circumstances. In practice, however, only a minority of pupils with special needs have the opportunity of attending regular classes, and even when they have this opportunity, the schools and/or the teachers are disadvantaged both by lack of resources and by a dearth of specialists knowledge in their attempts to ensure the success and staying power of these pupils. The lack of resources ends up promoting frustration on the part of the special needs pupil and his/her parents, and without doubt contributes to the marginalization and removal of the pupil from mainstream school. We have witnessed a great deal of effort on the part of the schools, teachers and public institutions aimed at ensuring the right of children with special needs to attend mainstream school, but we need renewed effort in this direction in order to change the present situation.” (p.110)
There is a need for more detailed studies which will allow us to evaluate the significance and benefits of such school inclusion.
The present study will discuss a specific aspect of inclusion which has this far received little attention in the literature concerning mentally handicapped people who are included in mainstream schooling: the formation of personal identity of these people and the implications for the inclusion process.
For this discussion it is necessary to consider two important aspects which have been analyzed in studies related to identity: the importance of social interactions and the process of character formation.
With regard to the first aspect, we can emphasize that the child builds his/her own identity through social interactions that he/she establishes in the social group within he/she participates. According to Glat (1989), man is fundamentally a social being and the image that he has of himself is given to him by those around him. This means that the interpretations received from others will be internalized by the person, and in consequence these others will play a fundamental part in the building of the person’s sense of self.
Initially, it is the family which will provide social experiences and which will transmit the social-cultural values present in the larger social group. Later on, the child will participate in other groups and his/her experiences will be broadened. School is one of the crucial places where children will establish new interactions and where they will expand their knowledge of themselves and of the surrounding world. In this regard, the social group is the reference upon which the individual builds and adjust his/hers personal identity.
The second aspect which we considered to be of fundamental importance for discussion in the present study is the process of identity formation that occurs throughout life. In this regard, as stated by Vigotski (1989), we need to substitute the traditional vision, which considers mental disability as something that will decrease the value of the child, with an idea that will take into account the dynamics of development, or an idea that would take into account the double influence of the deficiency upon the child, i.e. limiting the child, but at the same time pushing it forward, using its capacity of searching, via social relations, for solutions directed at its adaptation to its surroundings.
Ciampa (2001), in his social study about the formation of identity, showed the dynamic characteristics of this process, which he sees as being one of continuous transformation. According to him: “for identity to be understood, we need to understand the process of formation of this identity” (p.159). We believe that this understanding is important as it indicates the possibility of changes along the path of the formation of the person.
The idea of personal identity, the building-up of the meaning of oneself during the process of growth of mentally disabled persons were aspects discussed by Goes (2004) as being important themes which nonetheless had been studied only sparingly in the practice of school inclusion. According to this author, in spite of these themes “…being entangled with themes of learning of content of an instructional nature, they expand beyond the condition of the learner” (p.70). In her discussions, Goes (2004) shows the need for an evaluation of the attention that school gives to the need of “…meetings between similar people, in a way that the pupils could have a larger experience of their own meaning, being able to elaborate on similarities and differences, also related to what characterizes their special need (p. 81-82). This concern had its origin in the assumption that many disabled pupils, because they are included in mainstream schools in different classes and units, “are having little opportunities (sometimes none) to compare the similarities they have with other pupils that have the same kind of special need, recognized and classified by the social group” (p.81).
The concept that meeting with similar people is an important aspect for the pupil’s make-up is also considered by Ciampa (2001). This author calls our attention to the fact that one of the secrets of identity is the “articulation” of the differences and similarities. Concerned about the identity as part of a continuous process of transformation, Ciampa emphasises:
…”Through the articulation of similarities (real equivalences) and differences, each of my positions determines my sense of self, making of my concrete existence the concept of multiplicity. The development of those determinations creates my reality” (p.170).
Considering that the main concern of the present study is the formation of the identity of the mentally disabled person and the implications of this for the inclusion process, we studied how these people are being formed and shaped by their school experiences, by analysing what they reveal in their descriptions of their experiences of inclusion.
Interviews carried on with youngsters with Down’s syndrome
Interviews with pupils diagnosed as mentally handicapped were carried out with the aim of understanding their experience of mainstream school inclusion. The pupils interviewed were having, or had had, experience of inclusion considered successful when compared with those that more generally result.
The interviews were carried out addressing, in an open manner, different themes which would reveal the reality of the pupil’s experiences. The themes were: comparative evaluation of experience in the mainstream school and in the special school (in the cases were this situation existed), difficulties faced, relationship with teachers and colleagues and future projections.
All the pupils had the objectives of the study explained to them and agreed to participate in the interviews.
The following topics were selected for analysis: evaluation of the mainstream school, friendship patterns and self image.
The Introduction of the subjects of the study
We are going to present in this paper extracts of interviews carried out with two young people (a boy and a girl) who have Down’s syndrome. These extracts focused upon aspects which reveal information about how the disabled person’s development is influenced by mainstream schooling and how school influences their personal development.
R. is an eighteen year old boy who went to a special school and afterwards went to a private mainstream school. He lives with his parents and has two elder brothers who are now living in different cities. At the time of the interview he had finished the 8 th year of “basic” school and was waiting for his graduation. He has command of a structured verbal language, albeit with some breaks in fluency and difficulties in articulation. He is able to read and write.
ED. is a twenty one year old girl. She lives with her parents and an older brother (23 years of age). At the time of the interview she had just finished “intermediate” school. She attended a special school, near where she lives, for four years, until she was eleven years old. From there she had finished her “basic” and “intermediate” schooling in a public mainstream school. She has a serious sight problem and will probably need a cornea transplant. She employs structured verbal language with some breaks in fluency. She is able to read and write.
We are now going to describe the data obtained and present our analysis of it. The interviews were recorded and subsequently transcribed. The subjects are represented by the letters R and ED. The researchers are represented by the letters I, EV and M
Evaluation of mainstream school
R’s experience of mainstream school is described by him as something that was very difficult at the beginning but that he evaluates overall as “cool”. In many parts of his interview he mentions the difficulties he encountered and his trials to overcome them. He relates the problems he finds to his willingness to do or not to do what was demanded of him. He never relates those problems to the difficulties inherent in his disability.
1. R: -“…I find the school (…) very good, because even (…) during my early education I was thinking the following: how good it is to study here, the school is like my home because I don’t get tired of studying here, then, you know, when I was relating to people there, it was very cool and also, the main thing was that I really didn’t want to write.
2. I: - Don’t you like to write?
3. R: - I didn’t like to write, then, when I went to the 1 st year, then I started to…., to get even worse. I used to lock myself in the bathroom and do lots of naughty things.
4. I: - So you didn’t have to do writing?
5. R: - Yes, so I didn’t have to write (…). Then I had to do the 1 st year again (…). Afterwards I calmed down and I studied, and this is it (…), it is your responsibility to study, then, when I was in the 2 nd year I passed and I wasn’t naughty and I went trough (…). When I went into 3 rd year then I had to repeat it again (laugh) I was being naughty again. I didn’t want to study; I was ignoring my teacher and started to do lots of things like outside the normal things (…)
6. I: - What sort of things did you do?
7. R: - Ah things like this: I locked myself in the bathroom and afterwards I used to go to the public phone box which is there in the school, and then I used to drink soft drinks (…)
8. ……
9. R: - Claudia was my 3 rd year teacher. She used to say: “R., where have you been?” I was in the playground, “see if you think you are allowed to go to the playground during the time of the class”, she said, “I am going to complain to Fatima”, and I said “What good do you think that is going to do?” (…) Then they passed me to the 4 th year and I met some of my friends. I had a best friend, I liked her a lot and I still talk to her now, it was Rebeca, I met her in the 1 st year.
R. says that he didn’t like to write and he tells what he did to show this fact to the teacher and the head teacher.
The young ED evaluates school as a place that will give her the chance to learn and then to find a job, because she will have her Diploma, as we can show with the following data:
1. ED: - …my, my dream…
2. EV: - Ah…
3. ED: - …after I graduate
4. EV: - Ah…then, are you wanting to say that your dream is to graduate?
5. ED: - Yes
6. EV: - Is it? OK. To be able to work with what you had studied?
7. ED: - My father and my brother work…
8. EV: - Ah!
9. ED: - and my mother doesn’t.
10. EV: - and you? Do you want to work?
11. ED: - I want to work….
12. EV: - This is good…
13. ED: - to earn money…
Or in:
1. M: - and what does school means to you? Now, that you are nearly finished…
2. ED: - to get my Diploma!
We can conclude that the desire to graduate to be able to work, demonstrated in the youngster’s interview, could be a consequence of her experiences at home, where the father and brother work and have a financial reward; this seems to be a value from the family. Financial independence and the hope to find a job could also be themes discussed by her colleagues at school. Those colleagues are finishing intermediate school before being able to go the University or to start their professional life. Independent from where ED is getting influenced it was clear that her ideas about work and independence are not very different from the hopes of non-disabled youngsters in our society. Based on this observation we can say that the experience that ED had with her colleagues in mainstream school brought about some positive hopes, motivation and attitudes that helped her to be included in the social group contributing to her future plans.
The friends
R. was asked, during one of the interviews, about the special school he went to before he was included in mainstream school. At this time he spoke about how much he suffered when he left the friends from that school. He said that everything was good in that school and that he didn’t want to leave it. He also said that he became depressed after he left that school and that he was mislaid when they moved him to the other school. He expressed the wish to go back to live in the town where he went to school with a friend who also had Down’s syndrome. When he was asked if nowadays he has a friend as close as this other one he answered that he has. He was asked what activities they do together after school, and R. answered that they do not go out together because the friend has a girlfriend. It appears that in reality he admires the colleague but that their relationship is not really of true friendship. When asked about details of the relationship, he said he only sees the friend in the school.
1. R: - In the CDI, is it?
2. I: - What do you remember from there?
3. R: - There in the CDI. I would like to say that I starting to cry because I didn’t want to leave there and see, when I was in the CDI I think I was there for six years, more or less, I don’t know very well, with Ariel, with Hugo with these people that studied with me.
4. I: - Do you remember everybody that studied in CDI?
5. R: - Yes, yes, I remember.
6. I: - Who do you remember?
7. R: - I remember Ariel, Hugo and Carol they studied with us and….
8. R: - (…) and when I was studying there, see, everything was right, everything, studying there in the afternoon (…) I left there when I was seven years old and I was depressed, I was depressed because I left Campinas and I thought that Campinas was my town, was my home I thought I was going to live in Campinas but I was mislaid I moved away and I’ll have to study in Piracicaba and then Ariel didn’t stop crying and I was crying the whole day.
9. I: - Ariel and you?
10. R: - Yes.
11. I: - This was because you had friends there.
12. R: - It was because I had friends that I loved a lot and I didn’t want to move school because I used to think like this I don’t want to move from here, (…) Then, I don’t know how our friendship is going to be, one far from each other, then I was thinking like this: of finishing the last three years of secondary school and going to University, there, in Campinas to stay five or four years and then during time at University I will stay in Campinas keeping Ariel company.
13. I: - Do you want to live with Ariel? Is this it?
14. R: - Yes, I want to live with him (…)
15. I: - R., tell me something, when you came to the school in Piracicaba didn’t you meet a friend you liked as much as Ariel?
16. R: - Yes, I have a friend. He is Eure.
17. I: - Ah Yuri?
18. R: - Yes. He is a very nice person, cool, gentle, caring.
19. I: - Do you go out with him?
20. R: - I go out with him sometimes, only during the day. I meet him at school when I have classes with him; the year before he already had a girlfriend.
21. I: - I know.
22. R: - She was Suzani (…) so I keep thinking, because I see everybody in the school and everywhere, so I keep thinking, I’d like to have a relationship, a girlfriend, and I see that the others are having girlfriends, and I feel like crying because I don’t have a girlfriend.
In the case of ED, in spite of her references to friends and even a boyfriend that she has at the mainstream school, as is the case with R, it is apparent that these relationships are only exist inside the school space and outside the school there are no social interactions. We can also identify that in the school environment there is no exchanges about the academic content of the classes and similar subjects. Therefore it appears that the youngster participates in the same physical space but does not establish effective sharing friendships. We can identify this by the following data:
1. EV: - Is Giovana your best friend?
2. ED: - Yes.
3. EV: - Does she live close to you?
4. ED: - No.
5. EV: - Where does she live?
6. ED: - I don’t know.
7. EV: - Have you been to her house?
8. ED: - I’ve got her telephone number.
9. EV: - Ah! You have her phone number!
10. ED: - I’ve got lots, from Katia, from Daiana…
11. EV: - Did you phone them?
12. ED: - After the graduation. After the graduation I am going to phone them.
13. EV: - Ah! Is it because now you meet them at school everyday?
…..
1. EV: - Do you go out at the weekends?
2. ED: - Yes.
3. EV: - Who do you go out with?
4. ED: - With my mum, only with my mum. I follow her wherever she goes.
5. EV: - What about with your dad or your brother?
6. ED: - With my dad and my brother only sometimes.
7. EV: - Only sometimes?
8. ED: - Yes
9. EV: - And when do you meet your boyfriend?
10. ED: - Only at school…
Self image
Apparently, R. worries a lot about not having a girlfriend. During his interview he tells us that his colleagues have girlfriends and that he doesn’t. This fact makes him sad. R. says that his dad suggested that he can have a girlfriend that also have Down’s syndrome, but he says he wants somebody different from him.
1. R: - My dad keep telling me to have a girlfriend like me, that also have Down’s syndrome, but I don’t like this, really I don’t, it would be a nightmare for me.
2. I: - I didn’t understand. Did you dad tell you to have a girlfriend with Down’s syndrome?
3. R: - Yes, like me.
4. I: - and you don’t want this.
5. R: - No, I don’t want this. I want somebody else.
6. I: - You want somebody else.
7. R: - Yes, someone who doesn’t have this.
8. I: - Someone who doesn’t have Down’s syndrome?
9. R: - Yes
10. I: - Why you don’t want somebody with Down’s syndrome?
11. R: - Ah, because I am already used to having normal woman. That’s it.
12. I: - Is it because you don’t know any woman that has Down’s syndrome that you loved?
13. R: - Yes.
The fact that R. says that he doesn’t want a girlfriend like him, with Down’s syndrome, makes us think about the image he has of himself. His peer’s references, at the mainstream school, are “normal” youngsters. Therefore, what are the references he is using to understand himself, the others and the culture that is being offered to him?
As mentioned by Goes (2004):
“…to meet the ones who share the same characteristics of one’s difference is essential in daily relationships, or better still, it is a necessary condition for the constitution of the individual. In this manner, the internalized and reconstructed experiences will allow the individual to place himself in the world and find his own meaning as somebody that is part of various groups and additionally but not secondarily, somebody that is part of a specific group, linked to the difference/deficiency that they present.” (p83).
We noticed that R. has no opportunity to live with youngsters similar to him and he also doesn’t have a positive image of the ones similar to him; the negative image is most likely the image he has of himself. He is living with people who are different from him and those are his references.
In the case of ED we noticed, based upon the interviews analysed here, that she doesn’t see herself as being different from her colleagues, or having Down’s syndrome:
1. M: - Ah, cool! ED, hoe do you feel in your school? What do you think? Do you think you are different from the others?
2. ED: - If I am different?
3. M: - Yes. Do you like to talk to other people that are different from you? You, who are different?
4. ED: - I like my girlfriends, I like them. And I like my wee boyfriend!
5. M: - Your boyfriend. Ah! So you like to talk?
6. ED: - Yes.
It doesn’t seem that ED feels different or is conscious of having Down’s syndrome. She apparently doesn’t feel disadvantaged by it because she doesn’t talk about any difficulties in her relationships with her friends and she even says she has a boyfriend. Meanwhile it seems that these relationships don’t happen exactly in the way that ED describes them, as we could see, that when she talks about her friends she doesn’t actually meets them outside school. Therefore we would like to discuss the fact that in spite of living daily with youngsters from her age group ED is not building a real image of her capacities or of the real way that her relationships are developing. If it would be possible to discuss her limitations with her, perhaps her capabilities will be more effective in allowing her to be included in the social group.
Conclusion
Based upon the examples of the young people who were the subjects of this analysis we can conclude that they, in spite of the difficulties faced in mainstream schooling, took this experience to be positive in their lives, because it promotes contacts with other children and young people. They are also clear, that it is school that permits access to independence and to paid jobs, the same dreams of all people in their age groups. This is a positive and essential factor in the formation of the identity of these youngsters.
Meanwhile we also identify in their own accounts that in spite of frequenting the mainstream school environment, this did not favour the creation of bonds of friendship outside school, and that these youngsters have their social life greatly restricted to family and close relationships, mostly prioritised by the mother. Therefore the social contact in the school is not fulfilling its ascribed role of promoting effective interactions.
It appears that mentally disabled young people do not have sufficient experience to allow them to elaborate upon their similarities and differences. In mainstream school they co-exist with different people and do not find reference points to allow them to recognize themselves in the group. This absence of meetings with similar people seems to contribute to a difficulty in the constitution of the persons who either do not have a clear image of themselves, as it seems to be the case of ED, or even have a “prejudice” against the ones like him, as it is the case of R.
The discourse of the youngsters demonstrated that they are not having the opportunity of elaborating upon their similarities and differences, and as was shown by Góes (2004), the school has not prioritized the promotion of meetings between similar people in such a way as to provide the students with “amplified experiences of their own meaning” (p82).
From the results obtained we conclude that there is an apparent difficulty for the youngsters in elaborating their sense of self by comparing similar and different personal characteristics. This can explain the prejudice against his peers with Down’s syndrome of one of the youngsters from our study, who would like to have a “normal” girlfriend, different from him, who will not have the syndrome. We form our own image and the image of the people we live with by “the look of the others” (Bakhtin, 1997). If the look of the other only allows us to give value to what is different from us, what sort of image will we have of ourselves?
This study helped us to comprehend how much “inclusion”, from the view point of the included person, is still a project that needs more effective discussion and action. In this way, we believe that the role of society, in particular parents and educators, is of fundamental importance in making it possible for these youngsters to have a better perception of themselves, their capabilities and their difficulties.
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