It is difficult when you are a child to relate to strangers. It is also difficult when you have no voice. I was nonverbal and all these...adults had complete power over my life. I cried . I had pain in my body. I had pain in my heart...I cried because I was lonely and afraid. I cried because people couldn't understand me-my words or my feelings. I was often sent to a special room because I was too noisy. I guess I can thank God for giving me a fighting spirit, because the harder it got the harder I struggled (Justin Clark, describing his experiences as a child with cerebral palsy living in an institution, in Clark & Pellerin, 1996, p. 7, as cited in Beukelman & Mirenda, 1998, p. 245).
As I have reflected on in previous posts, it is imperative to listen to the stories that disabled children tell in their own voices and through their own modes of expression. Unfortunately, there is little research and material authored by children in the first person about individual experiences and ways of being in the world. Could this lack of information be due to a communication barrier in asking, receiving or transmitting this information or is it simply as Priestly states that “the voices of children with disability have been excluded” (2009, p. 210)? Perhaps this exclusion is due to the legitimizing of “experts” as Cannella explains that are “...given exclusive rights to speak and act”, in this case imposing their views and interpretations in the field of childhood disability ( 1999, p. 39).
How can we as educators advocate on behalf and with children with disabilities without repressing the individual child's voice? How can we advocate on behalf of children without taking on the role of the 'experts'?
Perhaps this starts with listening, validating and , appreciating the way that children communicate their wants and needs to us as educators. Perhaps along this journey together a child will learn the skills needed to advocate for themselves.
Katherine Owen and Jackie Downer discuss the idea of intellectually disabled people using self-advocacy to use their voices to “communicate in other ways” (n.d). The following is an excerpt from the blog: http://www.intellectualdisability.info/changing-values/self-advocacy
I've got a voice and even without a voice I can communicate in other ways
It is important to emphasize that having a voice of your own does not necessarily mean having a literal voice. People who are non-verbal are able to communicate themselves, their likes and dislikes, their wants and needs, in ways other than words...This is important because self-advocacy is sometimes criticized for only being relevant to people who have mild to moderate intellectual disabilities. It is necessary to acknowledge that all people, even those with severe intellectual disabilities, can communicate and express themselves (Owen & Downer, n.d.).
I have included a video illustrating one person's story.
References
Beukelman, D.R., & Mirenda, P. (1998). Augmentative and alternative communication management of severe communication disorders in children and adults (2nd ed.). Baltimore, Maryland: Paul H. Brookes Publishing Co.
Cannella, G.S. (1999) The scientific discourse of education: Predetermining the lives of others- Focault, education and children. Contemporary Issues in Early Childhood, 1, (1), 36-44. Retrieved from: http://moodle.capilanou.ca/file.php/1397/Foucault_education_children.pdf
Owen, K,; Downer, J. (n.d). 'I've got a voice and even without a voice I can communicate in other ways'. Retrieved November 21, 2010 from: http://www.intellectualdisability.info/changing-values/self-advocacy
Priestley, M. (1998). Childhood disability and disabled childhoods: agendas for research. Childhood, 5, p. 207-223. DOI: 10.1177/0907568298005002007
Zikasilver1. (2008). Speaking is Not Communication-Autism does not Speak [video]. n.p: n.p.
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