Reflection on Berube's "Life as we know it"

Sorry everyone I completely forgot to post!

Michael Berube's introduction and epilogue from Life as we know it helped me to think more about representation, and the ethical obligations of representing someone else's story.  In the introduction, Berube discusses how when he spends time with his son Jamie, it is a struggle to think about the labels and future attributed to a child with Down syndrome.  This is something that I have experienced both with the participants at CCW as well as with my brother Chris.  While Chris is younger, I have absolutely no memory of what my life was like before having a sibling with Down syndrome, and since Chris is my only sibling I have no experience of how our lives and relationship are different from a "typical" sibling relationship outside of conversations that I have had with friends.  My parents were always forthcoming about Chris's disability, and I knew from an early age that Chris had Down syndrome, but for me Down syndrome seemed like something to be proud of.  When I was little, I used to tell my parents that I wanted to have Down syndrome because Chris got to do all sorts of "fun" things that I didn't get to do, like occupational therapy, physical therapy, etc., and because he always got more attention than I did (he was a really cute baby).  I never realised that sometimes when I proudly told someone that I had a brother with DS they became uncomfortable or expressed their sympathy, because my only knowledge and experience of a person with Down syndrome was Chris, my sometimes charming but mostly annoying little brother who let me dress him up and sometimes pulled my hair.  I'm sure my parents had a very different experience, but I had no knowledge that Chris' "label" of Down syndrome was something that would impact his future, and something that would change how other people treated him.  

Berube also addressed ideas regarding representation in both the introduction and epilogue.  Specifically, he discusses how as a father of someone with a disability, he feels an obligation to represent disability outside of traditional doom and gloom models, but he also discusses the ethical implications of this.  I think that Berube brings up a really interesting and applicable point about representing disability- do parents/ siblings/ family members share an obligation to represent their child/ sibling/ family member's disability, to "inform our children about the traffic and inform the traffic about our children" (Berube xix)?  If that is the case, what sorts of representation are acceptable and what sorts of representation are not?  We have discussed a little bit in class how important self-advocacy and self-representation are in the field of disability studies, but Berube also speaks to the importance of allies, able-bodied people who join in articulations and representation of disability.