Comments on: Autism finds a brave voice--It's own...by Pete McMartin

I was recently sent the following article titled :Autism finds a brave voice -- its own The fact that there is an advisory committee composed of people who live with the disorder is nothing short of wondrous. This article was written by Pete McMartin, of the Vancouver Sun on November 25, 2010.

This article discusses the “advisory committee” for the “Autism Society Canada” http://www.autismsocietycanada.ca/ (McMartin, 2010). Many organizations have advisory committees but what is interesting to note is that this committee is composed of people who have autism (McMartin, 2010). People with autism are using their voices to influence decisions that are being made based on their feedback and experiences of having autism.

Forgive me, but is this not the way it should be? How can Autism Society Canada make any recommendations or decisions without the involvement of people that have autism? What does it mean to be seen and heard in this world, especially if your are a person with a disability?

Consider this provocation. “Our personhood (narrative identity) is shaped by our own stories and stories of others. How can someone have a narrative identity if they can't express it themselves” (S.Kind, personal communication, October 13, 2010)?

Autism is a neurological disorder that children are born with. Certain characteristics of autism may be present within the first few years of life but do not always confirm a diagnosis of autism. These characteristics may include: lack of verbal language, repetitive movements and behaviours, lack of eye contact and lack of social/emotional response, to list only a few (Autism Society Canada, 2007). This description is part of a medical model of autism. This is often the only view that people with disabilities are viewed by, as having a “lack” of something (Titchkosky, 2003, p.p 105-106). This descriptive but narrow model of autism doesn't acknowledge the social construction of a person with a disability that has rights, a voice, an identity and “... a life worth living” (Michalko, 2002, p. 16).

It is interesting to observe the story of Temple Grandin. A quote from her website states that: “ Dr. Grandin is a designer of livestock handling facilities and a Professor of Animal Science at Colorado State University ( Grandin, n.d. ). In addition to her work with animals “Dr. Grandin has become a prominent author and speaker [and self-advocate]on the subject of autism” (Grandin, 2010).

Temple Grandin was one of the first people with autism that highlighted that people with autism were very capable. Temple Grandin's book “Emergence: Labeled Autistic...stunned the world because until it's publication, most professionals and parents assumed that an autism diagnosis was virtually a death sentence to achievement or productivity in life” (Grandin, 2010).

Temple Grandin (August 2010) The world needs all kinds of minds
http://www.ted.com/talks/temple_grandin_the_world_needs_all_kinds_of_minds.html




Both of the videos I posted on my blog in different postings:  The multi-modality of language and communication http://www.youtube.com/watch?v=JnylM1hI2jc and The hidden voices of children: released http://www.youtube.com/watch?v=TyyuYE2_hdQ , were created by persons with Autism. McMartin's view of people with autism being on an advisory committee as “nothing short of wondrous” seems limiting (2010). In the words of Silentmiaow in her video In my Language, she states that “...only when the many shapes of personhood are recognized will justice and human rights be possible” (2007).

The voices and personal stories of children with disabilities are missing in the field of disability studies- What will it take to include these voices? Is it the illustration of more role models? Is it the inclusion of more self-advocates like Temple Grandin? Is it through the power of social justice? What will it take for children to use their voices to demand their right to be heard?


References

Autism Society Canada. (2007). What is autism spectrum disorder? Retrieved from: http://www.autismsocietycanada.ca/pdf_word/info_ASC%27swhatisautisminfosheet_27_June_07_e.pdf

McMartin, P. (2010, November 25). Autism finds a brave voice -- its own The fact that there is an advisory committee composed of people who live with the disorder is nothing short of wondrous. Vancouver Sun. Retrieved from: http://www.vancouversun.com/health/Autism+finds+brave+voice/3881672/story.html#ixzz16KekCxLo

Michalko, R. (2002). The difference that disability makes. Philadelphia, Pennsylvania: Temple University Press.

Sientmiaow, ( 2007, January 14). In my language [video]. Retrieved from: http://www.youtube.com/watch?v=JnylM1hI2jc

Temple, G.(n.d.). Retrieved from: http://www.grandin.com/temple.html

Temple, G. (2010). Temple Grandin PhD. Retrieved from: http://www.templegrandin.com/ .

Temple, G. (August 2010). The world needs all kinds of minds. Retrieved from:

http://www.ted.com/talks/temple_grandin_the_world_needs_all_kinds_of_minds.html

Titchkosky, T. (2003). Disability, self and society. Toronto: University of Toronto Press.