The drama of families with deaf children

Procedia - Social and Behavioral Sciences 29 (2011) 322 – 329

International Conference on Education and Educational Psychology (ICEEPSY 2011)

Entering school: The drama of families with deaf children Cátia Marlene Silva Monteiro Santos * Unidade Local de Saúde de Matosinhos EPE, Rua Dr. Eduardo Torres s/n,4460 - Matosinhos, Portugal

Abstract Deafness can impair the normal cognitive and social development in a child. Therefore, the beginning of school is a cause of stress for the child, family and school community. Through a literature review, this paper aims to list the concerns that deaf children’s parents have to deal with and to identify the role that the Portuguese sign language interpreter represents in the school organization and how he/she can be a stress reduction facilitator for children and their relatives.

©©2011 Published by Elsevier Ltd. Selection and/or peer-review under of Dr of Zafer Bekirogullari. 2011 Published by Elsevier Ltd. Selection and/or peer-review under responsibility of responsibility Dr. Zafer Bekirogullari Cognitive – Counselling, Research & Conference Services C-crcs. Keywords: Deafness; Family; School; Sign Language Interpreter; Support.

Introduction Given the multicultural context that has becoming increasingly common in our society, families and schools are places where the 'difference' converges. In the case of deaf children, professionals play a remarkable role in their life as well as their family, and the diagnosis of deafness is the beginning of that contact. These parents have to take many decisions that parents of hearing children do not need regarding communication methods, amplification technologies, available medical options, educational programs, among others. Therefore, a plurality of functions emerge for which they are unprepared, and the need for qualified professionals to obtain information in order to make decisions is a concern to be taken. So there must be a multiplicity of specialized professionals available for these parents and children. In this context and by emphasizing some prepositions of the deaf culture, this article aims to list the concerns that deaf children’s parents have to deal with and to identify the role that the Portuguese sign language interpreter represents in the school organization and how can he/she be a stress reduction facilitator for children and their relatives. This article is divided into four parts: an initial approach to the specific context of deafness; the family with deaf children; the school they attend and finally the role of the Portuguese sign language interpreter and his/her importance in the relationship between school and family. This article is based on a literature review, conducted in January 2011 from EBSCO Host scientific database.

* Cátia Santos Tel.: +351938262744 Email address: [email protected] 1877-0428 © 2011 Published by Elsevier Ltd. Selection and/or peer-review under responsibility of Dr Zafer Bekirogullari. doi:10.1016/j.sbspro.2011.11.246

Cátia Marlene Silva Monteiro Santos / Procedia - Social and Behavioral Sciences 29 (2011) 322 – 329

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The following descriptors were used with the following combinations: 9 Portuguese; Sign Language; Interpreter. = no results were found 9 Sign Language; School; Family. = 9 results were found (from 1989 to 2010) 9 Sign Language; Stress; Family. = 4 results were found (from 1989 to 2009) 9 Stress; Family; Deaf Children. = 7 results were found (from 1962 to 2008) 9 Stress; Deaf children; School. = 16 results were found (from 1979 to 2010) 9 Deaf Children; School; Family. = 32 results were found (from 1980 to 2010) After reading the sixty-eight articles, many of them repeated, we felt the need to consult some of the bibliographic references used by the authors. 1. Deafness The recognition of sign language enables the deaf to become a social being. This transformation has also taken place because listeners have begun to look to the deaf in a different way, namely as an individual who has a distinct language and who uses various communication channels. Lopes (2007) report that "(…)much more than a body, here are involved ways of relating, ways of identifying with some and to distance themselves from others, and ways to communicate by the eyes using them as a link between equals" (p. 23). This change allows the deaf to constitute social groups that have interests, goals, struggles and rights in common, asserting themselves as a social group, as a linguistic minority community - right contemplated in the Portuguese Constitution in 1997. It is a minority group fighting for its culture to be included as legitimate in the social context. They build their cultural place establishing ties with those with whom they share their world but who are not deaf - usually they coexist with the codes of the dominant and normalizing culture. The deaf culture is characterized by the same type of evidence of any other culture: a common and shared language, a shared identity, competitive and hierarchical powers, the existence of behavioral norms, participation in social organizations, marriage between equals, the presence of cultural artifacts, among others. However, sometimes one gets lost between what is or is not the deaf culture. Therefore, this article highlights some of the most popular cultural elements: a) Sign language: It is the most significant element of the deaf community because it is always present in intercultural relations. It is the main feature that facilitates the identification of the community. Amaral, Coutinho and Martins (1994) mention that "(…) sign language is a motor-manual production and with visual reception, with its own vocabulary and organization" (p.37). b) Deaf Identity: The deaf community members identify themselves socially and culturally deaf, keeping a distance, and even a rupture between the hearing loss and the acquisition of sign language (Gesueli, 2006). That is, if a hearing child has sign language as a mother tongue then he/she is a member who belongs to the deaf community. c) Hierarchy: In the deaf community, there is the presence of leadership circles. Like any other human being, the deaf has a desire for domination and power. The deaf person also falls under other categories such as race, gender, class, nationality and other sources of difference, which can be promoters of hierarchy and even exclusion (Sá, 2006). d) Behavioral attitudes: There are differences in the behavioral attitudes of the deaf community, especially those regarding touch, eye contact and use of facial expressions. According to Reagan (1995), "(…)most notable here would be differences in eye contact patterns, rules governing the permissibility of physical contact of various sorts (including touching to gain attention)” (p. 244). e) Social Organization: There is the existence of social networks organized by the deaf, where they work voluntarily (e.g. deaf associations) which allow them to become a cohesive community and provide support to its members (Plue, 2003). f) Marriage: The marriage of equals is also a feature of this community (Reagan, 1995). g) Cultural artifacts: The presence of artifacts is also present in the culture of the deaf community through the construction of digital devices that allow long-distance communication, with simultaneous translation programs, bells and alarms linked to lighting devices, among others.

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It is in contact with other deaf people that the deaf finds references to understand their differences, their identity and their culture. Quoting Vieira (1999), it "(…) is the culture that shapes the life and the spirit" (p. 63). Thus, the deaf culture recreates itself every day as well as the culture of each individual. 2. Family The birth of a child who is "different" triggers unexpected reactions ranging from couple to couple. Silva (2005), states that "(…) the family dynamic changes after diagnosis of deafness, and that this is a time of mourning for the families” (p. 36). However, in general, feelings of sadness, anxiety, insecurity and loss are very present. There are several stages that parents go through after the deafness diagnosis, such as denial, adaptation, understanding, and acceptance of the deaf son/daughter. Naturally, that is not a static or sequential process. Since birth, the child is placed in the family context, which is responsible for ensuring his/her development in all its fullness. Sousa and Filho (2008) state that "(…) through human contact the child meets his/her needs and starts the construction of their perceptual, motor, cognitive, linguistic and affective schemes " (p. 2). In relation to that aspect, Silva (2005) calls our attention to the first difficulty that adults experience in living with a deaf child, which is the communication barrier because they do not understand each other. Thus, the process of acceptance of a deaf child promotes high levels of stress because parents are usually insecure about the role they should play. Silvestre (2007) even mentions that "(…) parents may think that deafness prevents the child to communicate and, therefore, that should teach her how to do it - a task for which they are not prepared" (p. 63). It should be noted that parents who have difficulty in communicating with their children report higher levels of stress (Zaidman-Zait & Most, 2005). The parental stress is a very important variable to be considered in the family context. Parents who have children with special needs often experience higher levels of stress compared with those who have children with a normal development. This is possibly related to the requirements that these parents face, such as time and availability of alternatives to consider at each stage of the child development. Mothers and fathers of deaf children are naturally no exception (Quittner, Glueckauf, & Jackson, 1990; Meadow-Orlans, 1995; FeherProut, 1996; Äsberg, Vogel, & Bowers, 2008). The early identification of deafness has the purpose to improve communication and the subsequent literacy, academic skills, and the quality of life outcomes (Fitzpatrick, Graham, Durieux-Smith, Angus, & Coyle, 2007). Thus, the age at which the diagnosis of deafness is done can predict parental stress (Pipp-Siegel, Sedey,& Yoshinaga-Itano, 2002). Several authors have reported that parents who receive adequate support experience lower levels of stress compared to parents who receive less support. (Lederberg &Golbach, 2002; Hassal, Rose, & McDonald, 2005; Asberg et al, 2008). One of the difficulties that parents encounter is the possibility of their son/daughter to develop a different language from theirs, and for that they won´t be able to communicate. Therefore, families need support for adjustment, acceptance of deafness and learning new skills. An earlier intervention affects the language development and the cognitive and socio-emotional adjustment (Lebedeff, 2001). The acceptance of deafness by parents usually leads them to the formal learning of sign language, because they understand that this is the first language of the child. According to some studies, these parents reported a better communication relationship with the child (Polat, 2003; Oliveira, Simionato, Negrelli, & Marcon, 2004; Luckner & Velasky, 2004, Jackson, Traub & Turnbull, 2008; Cortinhas & Silva, 2010). Parents and teachers say that one of the difficulties for deaf children is that they do not "speak" the school language, that is, they do not learn how to write in proper Portuguese given the different oral/written structure of sign language and this reason contributes to the stigmatization of these students. Silva (2005) notes that is tolerated by the teachers and families if the child does not speak, after all the child is deaf, but: “Not read or write properly like other child is a situation stand out by the teachers and much desired by the mothers. For them, to write well would be a way to reduce the stigma of deafness” (p.123). To integrate a deaf student in a regular class, it is essential to think about certain requirements, both physical and human, to ensure the possibility of access to content and knowledge that are going to be transmitted in the classroom. So, it is essential to consider the language issue of the individual.


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From this perspective, an effective way to include a deaf student in a regular class is to have him/her accompanied by a sign language interpreter (Lacerda, 2000). Thus, the student receives the information in his/her native language through a competent and qualified professional to do so. 3. School Going to school represents a major step in the life of a child and his/her family that involves a process of change that is unknown and in which he/she will establish relationships with a wider scope. Whether for children or for parents, this step may prove to be daunting, generating feelings of fear, anxiety and insecurity, thus requiring both parties, school and family, an effort for adaptation. Some authors point out several barriers that parents and schools have to face in the educational process of a child. Among them, they highlight the lack of information about deafness, on the education of deaf children, and being afraid to know something negative about his/her child, as well as being blamed for that (Kluwin & Corbett, 1998; Lebedeff, 2001). According to Sousa and Filho (2008), "(...) it is important that educators are prepared to deal with all emerging emotions (...) and have the sensitivity to share with the children and their parents the impact of these experiences(…)" (p. 5). Interpersonal, personal and academic development results from academic and social experiences. Placing deaf children in the mainstream education can be understood as a way to get to know deafness and make it known. Deaf people and listeners interact and learn to acknowledge, understand and respect their differences and characteristics. (Felix, 2008). However, we cannot neglect the role of school. This is the place to acquire knowledge and it must promote meaningful learning. If we truly want an effective inclusion, we must consider the specific and special learning needs of all the participants - both deaf and hearing students - and implement actions to meet those needs (Felix, 2008). However, deaf children are placed in large classes and do not always have the necessary attention from teachers who don’t feel qualified to face and teach these students. Silva (2005) points out that “(…) the difficulties with the language of the school lead in many cases to successive repetition and ultimately dropout. To prevent this situation, it is necessary, I repeat, that the issues of deafness must be seen not as another problem of the school (…) “(p. 265), but as an opportunity of developing others and ourselves. The education of deaf children requires the existence of human resources that meet their specific needs. Therefore, it is essential to create an atmosphere that promotes ways to rethink the practices of professionals who work with these students and assist their parents. Therefore, school should establish itself as a field promoting values and attitudes that lead to the civic participation of students along with the transmission of knowledge organized into subjects in a process of acquisition of skills that support the lifelong learning process and cooperate with the student’s autonomy (Lopes, Tomé, & Sousa, 2010). Taking into account everything that has been explained, it is understood that school, along with family, plays an important role in the social integration of deaf students. However, they are not fully prepared for this reality. This is why we see these students to become student-problem with learning difficulties, and dysfunctional behaviors, and even, in borderline cases, students with antisocial behaviors. These relevant facts are the justification for the concerns of the families with deaf children. It turns out that many parents are unaware of the school culture; they don’t know how to join or how to participate actively without being perceived as intruders/outsiders. For the families and for school, attitudes, expectations, goals, acceptance and adaptation to deafness are common concerns and they affect the academic performance of the deaf student (Kluwin & Corbett, 1998; Calderon & Greenberg, 1999; Lebedeff, 2001). The Salamanca Statement calls people’s attention to this issue of collaboration between family and school. In fact, it states that a successful education for children with special educational needs is not only the responsibility of the Education Ministries and schools, but it also requires the participation of families, among other partners, because the education of the deaf child is the ultimate purpose of the family and school (http://unesdoc.unesco.org/). Therefore, it becomes evident that the relationships between them need to be close and cooperative. But school claims the absence of parents, and parents accuse school of not fulfilling their duties, namely through the absence of a curriculum oriented to the transmission of values and not preparing students for the world of work and life in society (Sousa & Filho, 2008). In this sense, Lacerda (2005) said that "(…) the failure of the inclusion of deaf

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people is often linked to lack of training, adaptation of curricula and the lack of interpreters(…)" (p. 98). Martins and Machado (2009) added that "(…)the inclusion of school reality collides with the fragility of the training of professionals, who do not know the condition of the deaf student, the language and the role of the sign language interpreter(…)" (p. 238). Thus, it is essential to rethink curricula, strategies, physical and human resources and even the training of professionals involved in the school context, because, in reality, many of our schools still do not have in mind that deaf people are users of sign language, insisting on communication by speaking, and curiously they continue to insist on the question of why these students do not succeed in learning.

4. Portuguese Sign Language Interpreter

Given the lack of knowledge of sign language by teachers in general, and taking the role of schools to teach students for citizenship, we must clarify the true role of the sign language interpreter. This professional is going far beyond the decoding of the messages conveyed in the classroom between students and teachers (Koch, 2008). Reflecting on the intervention of this professional, the complexity of his/her role is understandable. The size and depth of his/her performance cannot be reduced only to the act of translating. So, along with the teacher, the performance is the key to provide the acquisition of knowledge and skills that lead the student to fully exercise his/her citizenship (Oliveira, 2009), as well to develop cognitive and intellectual skills. Among other things, the interpreter must foster the autonomy of the deaf student, encourage contact and dialogue between the deaf student, colleagues, employees, and finally the school community. Baptista (2005) goes further stating that "(…) we also need to be aware of and sensitive to the person of each student, their history and design (…)" (p. 108). For the deaf students, school is essentially a space to meet other deaf, and they relegate the academic role of school to an unimportant priority (Goes, 2006). The integration of a sign language interpreter in school is an asset for students. The sign language interpreter is an indispensable resource for the school community and he/she is responsible for the family approach to the educational context, as well as to the approximation of the deaf community. But the interpreter, by itself, does not assure that methodological issues are considered for each institution, and that the curriculum addresses cultural aspects of the deaf community (Guarinello, Santana, Figueiredo & Massi, 2008). However, the role of the sign language interpreter is significant in the teaching-learning process because he/she understands the different stages in learning of the students and he/she suggests learning situations cooperatively with parents and teachers promoting the child's autonomy and it can be an intellectual challenge for everybody. Quoting Sousa and Filho (2008) "(...) the clash between partners can help students overcome restrictive, individualist or authoritarian world views, getting more flexible, complex and creative schemes of meaning, by understanding other points of view(…)” (p. 6). However, the sign language interpreter does not fulfill all the requirements and even the cultural needs of the deaf person such as bonds and sense of belonging. However, according to some studies, one of the strategies of action is to give families’ access to information on the issue, specialists, and contacts with other families experiencing the same reality as well as create working groups or even support networks (Zaidman-Zait & Jamieson, 2007; Bittencourt & Hoehne, 2009). Thus, the sign language interpreter that is embedded in the school environment should reflect on the daily practice, collaborating with parents and guardians, teachers and the school community in order to be a dynamic agent and manager of the available means allowing the implementation of specific intervention programs with great benefits to deaf children. The elements involved in the educational process of the deaf child should have an attitude of transparency, clarifying what has been developed, allowing the creation of a platform for dialogue and constructive criticism (Mota, 2007). It is through the family support that the interpreter can grasp what the experience of living with someone who has hearing loss is. This cooperation makes it possible to identify and accept the diversity of individual deaf student and then to bridge the gap with the teacher, as exposes Mota (2007), "(…) to respond adequately to the problems that arise with the inclusion of any child (...) in terms of quality education for all students while respecting their


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individuality, their rate of learning, personal characteristics, schedule and organize the class in terms of all (…)” (p. 31). Collaboration between parents and Portuguese sign language interpreter is a slow and progressive path that requires courage, commitment and dedication of both parts, because as stated by Madureira and Leite (2003) it is a relationship that "(…) implies a questioning of beliefs, values, knowledge and personal and professional skills "(p. 129). It is imperative to establish a relationship of true partnership and mutual trust between parents and interpreter, because we should not expect parents to become technicians, since it would damage the child's relationship with the family. They know their child better than everyone, so it is natural that in certain moments of life feelings of anxiety, insecurity will intensify enhancing the levels of stress. Therefore, a partnership with the sign language interpreter allows parents to work with other parents groups, providing exchange of experience, mutual support, identification of similar problems, breaking social isolation, among other things. Meeting the needs of the deaf child and his/her family is multidisciplinary. Different professionals are involved in the development of the deaf child and his family: Physicians, audiologists, speech therapists, artists, special education teachers, and sign language interpreters, among other experts. So, it is essential that each and every one knows specifically what their functions and roles are in order to enable the family to obtain a better use of the available resources (Dalzell, Nelson, Haigh, Williams, & Montis, 2007). For all that has been previously explained, it is recognized that the versatility and communicative knowledge of the culture of the listener and deaf culture are an asset to the sign language interpreter, allowing him/her to be a link between the different actors in the deaf child development. Conclusion The experiences that occur daily in the family environment are the basis for the deaf child interaction within the school context. The family is indispensable for the emotional stability and education of the deaf child. So, an active involvement of the family is directly reflected in the success of the school tasks by the deaf child. School, in its turn, takes responsibility for the development of the student as an individual fit for citizenship, towards autonomy and critical thinking. However, there is still a discrepancy in the allocation of powers, which hinder dialogue and communication between these parties, making the student to take the role of an interlocutor between the various systems. In spite of this situation, we find a school where a massive learning is required, similar to an 'industrial assembly line', i.e., step by step with a predetermined timing and a similar process for all learners. Throughout this article, it became clear that even with a democratic, flexible, and multicultural society, there is still is the difficulty of communication between schools and families, and so the Portuguese sign language interpreter assumes a vital link between these two contexts - for his/her versatility and communicative knowledge of the different realities in which the deaf child lives. We need a common language and commitment between school and family to facilitate the development of deaf children, so the Portuguese sign language interpreter is essential for communication between all stakeholders.

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