Children’s Concept on Disability

Melgar, Gilyn P.

Children’s Concept on Disability

Introduction

According to Social Model of disability, the expert on disability should be the person with disability. The experiences and views of the people with disabilities are the most valued under this model. But most studies made about people and children with disabilities are mostly deal with intervention or teachers perception. There are few studies about children’s view or concept of disabilities. This paper aims to know how children with disabilities see themselves and their disabilities. Five children with disabilities with ages from 7 to 15 years old were interviewed. They are all under the SPED program of the Philippine public elementary school system.

Theoretical Framework

Traditional vs. Liberating Ideas
People with disability have gone through great deal throughout the history before society allowed them to be heard. Disability was viewed as a disease that needs to be cured and puts limitation to people, making them dependent to others for care under the Bio-Medical model of disability. Medical doctors are the source of information about disability under this model. This is disliked by people with disability according to an article by learning disabled people (their preferred term) which stated that no doctor can diagnose a person and get it right for their whole life (Docherty et all, 2005). According to them, the reason why doctors put them in hospitals and institutions is because they did not pass the “norm” so they are hidden away. This results to segregation of people with disabilities from society which is highly contested as well and is considered as moving backward because making a village just for people with disabilities is completely the opposite of inclusion (Docherty et al, 2005).

Another theory which affected people with disabilities, particularly children’s education, is the cognitive constructivism. According to this theory from Piaget, the emphasis in learning would be on the child’s construction of new knowledge through the child determined explorations and guided discovery (Kugelmass, 2010). Following this theory, an age-appropriate and child-center environment approach was prepared in 1987 by National Education of Young Children (NAEYC) which they called as Developmentally Appropriate Practice (DAP) wherein teachers were tasked to be facilitators of learning process and just allow the child to choose on how and when to construct learning. Consequentially, because assumption was made that children with special needs will not benefit from this kind of approach without active intervention from teachers or other adults, children with special needs where excluded from DAP (Mallory & New, 1996). This exclusion came from the belief that normal cognition and psychological development unfolded by itself and followed predetermined and biologically structured sequential patterns (Kugelmass, 2010). Thus, it completely rejects children with special needs/disabilities from school programs/activities which are covered by this approach which is again opposes inclusion.

The theories above were influential and deeply affected PWD in all aspect of their lives. However, liberating ideas from people with disabilities themselves have shifted the focus from being impairment-centered view to abilities of PWD and barriers that make their disabilities. The social model views society as the main cause which disables people with physically impairments and results to oppression. This came from UPIAS, a group of people with disabilities from UK who made this model in 1975. This model pushes for society’s acceptance of impairment and removal of disability. The society must make changes about its perception, laws, policies, and environment which cause disability. This model opposes segregation and supports inclusion. To make this happen, social model empowers the PWD as experts on disability because of their own experience unlike professionals like doctors who don’t have disabilities (Shakespeare, 2010).

Another idea which coincides with the social model of disability is social constructivism whose proponent is Vygotsky and his colleagues in Russia during the 1920s. This theory on learning gives an alternative view and opposite of cognitive constructivism mention above. It proposes that learning take place before developmental competency can be achieved. According to Vygotsky, learning and development take place as individuals operate within their zone of proximal development (ZPD). This hypothetical zone lies just beyond what can be achieved independently but can be improved with assistance (Moll, 1990). Social constructivism proposes that learning of children with special needs/disabilities can be done if the focus will be shifted to their abilities and strengths rather than their weaknesses and limitations. It also believes that inclusion of children with special needs/disabilities in ordinary school will reduce their self devaluation (Kugelmass, 2010).

These liberating views created changes in the society and disabilities compared to the previous centuries. Social movements of PWD were made; liberation of PWD was brought by identifying social barriers that should be removed as proposed by the social model; and these ideas have helped in improving the self-esteem of PWD and in building a positive sense of collective identity (Shakespeare, 2010).

Hearing From PWD Themselves The significance of hearing children is pegged on their rights to freely express their views (United Nations Convention on the Rights of the Child, Article 12). Given the special education program like inclusion as promoted by social constructivism or self-contained classroom setting, it is interesting to know how children with disabilities see themselves and how they see disability. Using personal experiences and perception of children with disabilities for research is on its early stage. Participatory research is a term used which referred to a method that is best characterized by “research with” rather than “research on” and it strives to ensure that the voice of those with special education needs (SEN) are represented (Lewis & Porter, 2010).

Although there are challenges for this research method like views of subjects may be altered and or manipulated by proxies/interpreters, type of response/action to gathered views, and whether to respond or not to the view of subjects (Lewis & Porter, 2010); there are similar studies and article made using this method. People with learning disability think that there are a lot of things that are misunderstood about their disability and their own views about it should be heard from them who experience it than from doctors (Docherty et al, 2005). In school setting, it was that found the perception of children with and without disabilities about their peers with disabilities are positive when it comes to physical but low in social abilities (Trepanier-Street et al, 2011). Another study found that children with intellectual disability educated in general education classrooms perceived their cognitive and physical competence and their peer acceptance very positively and their maternal acceptance positively (S. Huck et al, 2010). When it comes to family attachment, children with disabilities showed concern for their siblings, experienced parental responsibility, occupied dominant roles in play and were not always the child favored by parents (Serdity & Burgman, 2012). These studies all indicate the importance of getting the information from the source of experience.

However in the Philippine setting wherein inclusion is supposed to be followed but in reality most schools are still self-contained, it is interesting to get the perspective from children with disability themselves when it comes to disabilities and their identity as a person and student.

Study Aims and Methods

The aims of the study were:

● to explore disabled children’s understandings of disability;
● to examine the ways in which they negotiate the experience of disability in their daily lives;
● to examine the children’s perceptions of their relationships with professionals and their views of service provision;

In this study, the focus was more into the second aim. Five students whose ages ranged from 7-15 years were interviewed. Their exceptionalities were autism, mental retardation, and Down syndrome. They belong in self-contained classes under the Special Education program of public schools in Lagro, Quezon City and Noveleta, Cavite. Permission was asked from their parents and principal to conduct the interview. They were also provided the set of questions that will be asked to the students. They were also informed that the interview will be voice recorded. The students were briefed that they can choose whether to answer the questions or not and that there is no right or wrong answer. The following questions were asked during the interview:

Opening: Tell me about your typical day …
•Are there some things you are quite good at?
•Are there any things you find difficult to do?
•What’s the best thing about school?
•What’s the worst thing?
•Have you ever been bullied at school?
•Are there any things you need help to do?
•If you had a magic wand and you could wish for something to happen, what would you wish?
•What about your (disability) condition? Would you change anything about that?

One-on-one guided conversation was conducted at home and school of the students after 2 to 3 visits.

Findings
The findings suggest that the children with disabilities experience disabilities in impairment, difference, and other people’s reactions.

Impairment
None of the students directly talked about disabilities. The presence of disability was only evident on their everyday activities both at home and school. They responded to be good at self-help activities like eating, drinking, taking a bath, dancing, reading, and dressing up. These students have intelligence disabilities and the emphasis on self-help activities are usually part of the basic lesson in school. Only one gave a unique response by saying that she is good in washing small pieces of clothes. However, when it comes to the things that these students have difficulty doing and need assistance from others the responses are not that unusual. Four of the students all experienced difficulty doing school works like answering book exercises and doing home works which are common also among students without disabilities. Three students mentioned washing big pieces of clothes like pants, going to school, and making toys are activities they cannot do by themselves. One student shared that she had difficulty facing her fear of a tiger when they visited a zoo and asked for a teacher to walk next to her as they passed the animal’s cage. Again, seeking help when faced with fear is common among young and even old people. Only one student expressed awareness of her disability because her parents openly tell her that she is special. They make her feel that it’s good and it makes her unique from everyone that’s why she is satisfied with her identity and replied that she won’t change anything about herself.

Difference
The experiences in school and aspirations of children with disabilities are not completely different from children without disabilities. When they were asked about what they like about their school most of the responds were playing with schoolmates during free time and during Physical Education class, the school is big and has lots of toys; the teachers are kind and helpful, and eating in school. Two of the students said that they like their school; one said she does not like the rule that they cannot hug their classmates and one said that he does not like writing activities in school. One student chose to keep silent when asked what she doesn’t like about her school and the interviewer respected the student’s decision. There are reasons why the student chose not to say anything. One possible reason is that she is not comfortable disclosing her view about this matter inside the classroom with one of her teachers near her during the interview as seen in her body language (she looked at her teachers and classmates before saying she does not want to answer the question). This could indicate sensitivity on the part of the student or shyness/ “hiya” which is a typical Filipino trait.

The students’ responses when asked what they will wish if they are given a magic wand are interesting but not different as well. One mentioned that he wants to have lots of toys. Another said he wants to have a big motorcycle and learn how to drive it. And the last one said she wants to have a long life. For the things that they want to change about their self, one aspires to be a soldier but he knows it won’t be possible because he is discouraged by his family to hold and use a gun and one said he wants to be a child forever so that he can play toys.

Other People’s Reactions
When the students where asked if they have experience bullying at school, the response was a unanimous no. This is different compared with the similar studies on children’s perspective on disability where in children got discriminating reactions and bullied by children without disabilities where they are in inclusion program (Connors & Stalker, 2007). The response could be due to the type of program that they have in school which is self-contained. Only one student talked about an incident outside school wherein she told to a neighbor that she will tell her mother what he did, however she could not tell exactly what the neighbor has done or said to her when they were playing.

Discussion
The results of the interview tells the Filipino children with disabilities see themselves as equal or same with their counterparts without disabilities. They are capable of expressing their thoughts and they have a sense of sensitivity towards others. They don’t see their disabilities as hindrance to their activities both at home and school. They have not experienced bullying at school which is opposite to studies done on the same topic abroad. Hearing the voice of children with disabilities as the main data of a study is on its early stage and is pegged on the social model of disability. It is suggested that in making this kind of study to spend time learning about the child’s preferred way of communicating, the requirement to acknowledge methodological and ethical issues and the level of inference involved in the techniques used and the importance of interacting with those who are close to the child in order to build up a holistic picture of the child’s communication behaviors (Harding, 2009). In this study, the researcher could have spent more time with the students to be familiar with their usual behavior. The study concludes that disability does not define children with disabilities. It is part of their everyday life but their lives do not revolve around it.

References:

Connors, Claire & Stalker, Kirsten; Disability & Society Vol. 22, No. 1, January 2007, pp. 19–33

Docherty, Daniel et all; The Disability Studies Reader; 2010; Routledge, pp. 432-439

Harding, Emma; Educational & Child Psychology Vol. 26 No. 4, 200, pp.117-127

Huck, Sally; Kemp, Coral; Carteri, Mark. 2010 Journal of Intellectual & Developmental Disability, September 2010; 35(3): pp. 141–154

Kugelmass Judy W. 2007 The Praeger Handbook of Special Education, pp. 272-278

Lewis, Ann & Porter, Jill 2007 The Praeger Handbook of Special Education, pp. 222-230

Mallory, B. & New, R. 1996 Diversity and Developmentally Appropriate Practice, Teacher’s College Press

Moll, L. 1990 Vygotsky and Education: Instructional Implications and Applications of Sociohistorical Psychology. Cambridge University Press

Trepanier-Street, Mary; Seong Hong; Silverman, Kathleen; Keefer, Laura Reynolds; Morris, Tammy L. International Journal of Early Childhood Special Education. Dec2011, Vol. 3 Issue 2, p117-128. 12p. 1 Chart.

Shakespeare, Tom; The Disability Studies Reader; 2010; Routledge, pp.265-273

Serdity, Clare; Burgman, Imelda. Children & Society. Jan2012, Vol. 26 Issue 1, p37-50. 12p. 1 Chart. DOI: 10.1111/j.1099-0860.2010.00320.x.

Appendix

Transcription of Interview with Children with Disabilities

QUESTIONS:

Opening: Tell me about your typical day …
•Are there some things you are quite good at?
•Are there any things you find difficult to do?
•What’s the best thing about school?
•What’s the worst thing?
•Have you ever been bullied at school?
•Are there any things you need help to do?
•If you had a magic wand and you could wish for something to happen, what would you wish?
•What about your (disability) condition? Would you change anything about that?

STUDENTS’ ANSWERS

A. Name: Greer
Age: 12
Disability: Autism

Answers: 1. I go to school, I eat rice, and I drink water. I write science, math and computer. I wake up, I shower, I shampoo hair. I go to baby bus. I’m very good in school. 2. Bad in crying. 3. I like to eat in school. 4. I don’t like writing. 5. NO. 6. I need help in writing. 7. No answer. 8. No.

B. Name: Shady
Age: 14
Disability: Mental Retardation

Answers: 1. Washing of dishes and small pieces of clothes like handkerchief and underwear. 2. In school it’s doing math seat works. At home it’s washing large pieces of clothes like pants. 3. Playing with schoolmates during free time. 4. (She choose not to answer this) 5. No one has bullied me here, everyone is friendly. 6. Answering hard questions in our book. 7. To have a long life. 8. Nothing, I like myself. My parents said I’m special and I like it.

C. Name: Nicole
Age: 12
Disability: Down Syndrome

Answers: 1. Dancing “twist”. 2. (No answer) 3. Playing PE every Tuesday outside the room. 4. We are not allowed to hug classmates in school. 5. None, but I told my playmate that I will tell his mom who is our neighbor bout what he said. 6. When we went to Subic Safari, I cannot go near the tiger without my teacher because I was scared. 7. (No answer) 8. (No answer)

D. Name: Nathan
Age: 8
Disability: Mental Retardation 1. Reading books, eating, changing clothes, wearing my school shoes. 2. Going to school. 3. My teachers because they are kind. 4. None 5. No one because they are kind. 6. Answering my books with help of teachers. 7. Have lots of toys! 8. I want to be a soldier to help other people. But I cannot because they (family) said I cannot and should not hold guns.

E. Name: Miguel (aka Mickey)
Age: 13
Disability: Down Syndrome 1. Taking a bath and eating my meals. 2. I want to make my own toys but I can’t. 3. We have lots of toys here in school and our classroom is big. 4. Nothing I love my school. 5. No one because everyone is nice. 6. Doing my school works. 7. To learn how to drive and to have a big motorcycle. 8. To be young forever because kids can do anything like play anytime.

References: Kugelmass Judy W. 2007 The Praeger Handbook of Special Education, pp. 272-278 Lewis, Ann & Porter, Jill 2007 The Praeger Handbook of Special Education, pp Mallory, B. & New, R. 1996 Diversity and Developmentally Appropriate Practice, Teacher’s College Press Moll, L