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In Denial About Identity

mheffern's picture
Sophia Wong's "At Home with Down Syndrome and Gender" took me through a whirlwind of emotions, and I had to take multiple walking breaks to fully process the various arguments she analysed and anecdotes she provided in it. Some of the quotes from narrow-minded critics that she included made me angry, such as Peter Singer's cautionary advice that we must have "lowered" expectations of children with Down syndrome (Wong 94). Why must Singer quantify our expectations? Why can't they be "different" expectations instead of "lowered" ones? However, some of the ways in which Wong characterized her (and her family's) relationship with Leo also frustrated me: on the second page, Wong notes that, when Leo talks about wanting to go to law school or wanting to have kids, her parents "shake their heads and laugh gently" (Wong 90). To me, this reaction seems condescending and dehumanizing, as if Leo's feelings do not merit a direct response. Isn't Wong's anecdote about her karate club members allowing Leo to sit in on their class solely because he has Down syndrome categorically similar to her and her family refusing to acknowledge certain topics with Leo solely because he has Down syndrome?
     
Perhaps I am biased since my brother is very self-aware of his Down syndrome, but I disagree with Wong and her family's reasoning for neglecting to address this topic. She writes that she and her family deny the existence of Leo's Down syndrome because "we don't want him to feel limited by this society's negative, stigmatized perceptions and misinformed notions about people with Down syndrome and mental retardation in general" (Wong 105). Though Wong and her family have Leo's best interests in mind, isn't this defense ultimately a submission to society's false perceptions of individuals with Down syndrome? By not making Leo aware of his disability-which shapes, though in no way defines, his identity--it seems to me as if Wong and her family are not embracing Leo in his totality. 
 
It is interesting that we read this article this week, because I just recently watched an ad that Down syndrome international released on "World Down syndrome Day" that evoked similar opinions from me (here is a link to the video: https://www.youtube.com/watch?v=YhCEoL1pics). In it, a "normal" woman looks in the mirror as the narrator says "This is how I see myself." The video then chronicles different ways that the normal woman "sees herself," including as "a daughter, a sister, and a best friend." At the end of the clip, we learn that the woman looking in the mirror actually has Down syndrome as she says, "This is how I see myself--how do you see me?"
 
I shared this video with my family (including my brother) to gather their opinions, and we all agreed that we don't like it. As my mom said, "Can you imagine the uproar if an ad for African-American Awareness Day had an A-A seeing a white image in the mirror as the A-A spoke? Using the non-disabled actress suggests that bring non-disabled is a better way to look--that can't be good for a person with a disability's self-esteem! I don't think a person with a disability should want to look another way; I think the rest of society should have a broader, more inclusive definition of beautiful." Similarly, I think that by denying the existence of Leo's disability to him, Wong and her family are giving the impression that there is something "wrong" with Leo (even if this is not their intention). What if Leo finds out that he has Down syndrome from another source? I keep drawing parallels between this scenario and the hypothetical scenario of finding out that I was adopted--I would be hurt, angry at my parents for shielding part of my identity from me, and distrustful of them afterwards. I think Leo deserves to know that he has Down syndrome, as it is a component, though not the sole make-up, of who he is.