February 22, 2016 - 20:21
In the middle of doing the readings for this week I was scrolling through the news app on my phone and came across an article titled "Editors' Picks: Weekend Reading". As I read through their suggestions I noticed that under "On Relationships" it listed "A Quest for Love (from Esquire): One writer chronicles how her brother with autism has struggled to find companionship." I clicked through to Esquire's website (http://www.esquire.com/lifestyle/sex/a42078/love-relationship-autism-spectrum/) and proceeded to read the article, fully titled "My Autistic Brother's Quest for Love," which chronicles the very intimate details surrounding the history of Randy's relationships. While Randy is quoted a few times throughout the story and has left comments online, the story is written by his older sister, who straddles a tone somewhere between sibling and journalist - referencing Randy's emotions in a way that makes it unclear whether she is speaking from her perspective or Randy's. For example: "Randy, always ill equipped to read other's emotions, became nervous she might leave him and threaten to stop eating if she did"; "The next day my brother's caretaker, Ralph, let himself in for a scheduled visit and walked in on the two of them in bed…He stepped outside and immediately called my mother…she was shocked and, far away and unable to immediately resolve the crisis, felt helpless"; and "He had that look in his eyes, like he couldn't get enough of her. He was filled with happiness, something he hadn't felt in a long time."
In a way it was very challenging to come across this article and continue to think about this article while reading the pieces by Straus, Yergeau and looking through Walker, Grace and Bascom's blogs. In all of those works I found really awesome examples of how neurodiversity can look and feel and sound, and it seems to make sense that those speaking from within a community can best or most appropriately represent their own community. I can connect with and relate to the importance of their vision of self-representation in all its different forms (scholarly articles, blog posts, youtube videos etc). Reading the Esquire article felt like a snap back to the complicated reality of mainstream media, of media outside the world of Disability Studies, of media that prefers and often demands narratives to be coherent and logical. What does it mean for Randy's sister to represent the details of his intimate relationships, of his caretakers and assisted living facility, of his desires for "someone to care about," while his voice is left to the comment section? What does it mean for his story to be told at all - especially in a glossy source like Esquire, one that features "The 23 Hottest Looks from the Sports Illustrated Red Carpet" on the homepage?
Comments
Sibling Storytelling
Submitted by lindsey on February 23, 2016 - 19:00 Permalink
Something that I've thought a lot about, especially as a sibling of people with Down syndrome, is how I/ my parents discuss and represent my brother Chris' experiences. Chris is perfectly capable of speaking for himself, and is growing up to be an incredibly articulate self-advocate, however, there are many times where people assume that he cannot advocate for himself, or turn to my parents/I to speak for him. Since the article you posted was written by a sibling, it made me think about the role of siblings in advocacy. While if Randy's sister did not have permission to write about his intimate relationships, there is a huge issue in terms of privacy, is it still problematic for Randy's sister to tell his story if he asked her to? If Randy's sister is acting as an "interpreter", and Randy asked her to do so, what are her ethical obligations and what does that mean for Randy's story? Personally, I feel like my role as a sibling is to help make the world more accepting of Chris telling his own story. While I can't speak for Chris and that is never my goal, I too have grown up in a world shaped by my experiences having a younger sibling with a disability. My story will never be the same as Chris' story, but it also provides a different perspective to understand disability and Down syndrome. One of the hardest things that I have found when I write/ talk about my experiences is that people care about/ seek out to my story, whereas they don’t always do the same for Chris. Chris doesn't need help telling his story, in fact he is much more outgoing than I and is definitely more likely to tell people what his life is like than I am, however, that doesn’t matter until his story is viewed as equally important to mine.