This Time, It’s Personal (But it’s always personal)

Back when my husband (then-boyfriend) was participating in a writers/actors/directors workshop in college, he invited me to the staged reading of all the plays they’d been working on. One of the plays was a sort of dramedy that explored a marriage wherein the husband suffered from narcolepsy. I enjoyed it well enough, though it seemed like it still needed a lot of polishing. And then, during the audience feedback afterwards, a woman spoke up and almost immediately began crying. Apparently she had come to see this play specifically because she was living it as the wife of a narcoleptic. It was powerfully validating for her to see it portrayed like this.

I recall feeling deeply uncomfortable. First of all, because this woman was having a personal, emotional moment and it gave me a sense of eavesdropping on something private. But secondly, I felt like every criticism I’d had was now irrelevant. What did it matter what I, a non-narcoleptic or spouse of a narcoleptic, thought? This wasn’t a metaphor for marriage issues as I had originally been interpreting it; this was a real problem and I couldn’t begin to comprehend it, so my opinions didn’t matter and I’d better just keep my mouth shut. (Ha, like I would have ever opened my mouth, shy and timid mouse that I am. But anyway).

I’ve been thinking about this recently because I’ve grown and learned a great deal in the intervening years about what it means to engage with art on a personal level, both as the creator and as the audience. And I wish I could go back in time and tell my young self this important truth: your opinion is still valid. It’s not more valid than someone else’s, but it’s not less valid either. And you can just throw out the idea of objectively assessing a work of art, because such an assessment is impossible by definition. Every artist will approach their creation with a set of experiences and opinions, and every audience member will engage with that creation with their own entirely separate set of experiences and opinions. And that’s okay; it’s more than okay; it’s what makes the creator-audience relationship so exciting and dynamic.

Sure, you can assess skill to a certain degree of near-objectiveness. Some writing is clearly better crafted than others; great painters have more proficiency than lesser painters; a poorly-edited movie is going to be less coherent than a well-edited one. But those observations can only get you so far. Everything past that point is going to be opinion, and opinions are always, by definition, personal.

I have a son with low-functioning autism. He is non-verbal. This is a specific circumstance of my life that a great many people do not share with me. It informs so much of my day-to-day experience, and of course it affects my perception of stories, particularly ones that portray autism. I’m done feeling apologetic for that fact that I can’t objectively read or watch anything involving autism, judging it by its artistic merits alone. That’s just not going to happen. And my reaction is perfectly valid as long as I’m aware of and acknowledge how my personal life experiences are coloring that reaction. As long as I’m aware, in turn, of how other people’s reactions to my writing or any work of art are going to be colored by their own experiences. The quest for objectivity belongs in the realm of science. When it comes to art, it’s personal.

I saw Rain Man before my son was born and then again after he was diagnosed. It was a vastly different experience. The first time — I enjoyed it, thought it was a heartfelt, well-told story, with nice touches of humor and pathos. The second time — I was in tears almost from the very beginning. What struck me most was the character arc, not of the autistic character, but his brother. At the time the film was made, living in a group home with dedicated caregivers was just about the best they could envision for someone with the degree of disabilities Raymond has. So he doesn’t change much. He has a little adventure, but he’s not going to suddenly become functional or independent. The best possible outcome for him is to return to the group home, with at least the added feature of having a relationship with his brother Charlie. Charlie, on the other hand, undergoes a drastic shift. He begins the film as a very selfish, resentful man. He essentially kidnaps his brother just to try to get the inheritance he feels he deserves from his recently deceased father. Having to take care of Raymond, however, is a transforming experience. He has to think of someone else’s needs almost constantly — if he doesn’t, he could trigger severe public meltdowns or endanger his brother’s life. And gradually he learns to take care of Raymond not just out of necessity, but out of love. It all builds up to the climax, when he must become selfless enough to recognize that Raymond can’t stay with him and that the best thing he can do is let him return with his trained caregivers to the safety of his group home.

Let me tell you, taking care of someone with severe disabilities is beyond exhausting. It’s physically and emotionally draining on so many levels. And there are times when I fear that it’s turning me into the worst possible version of myself. I need stories that tell me there is hope of becoming a better person because of my caregiving.

Which is why reading The Curious Incident of the Dog in the Nighttime was one of the most excruciating experiences of my life. Because for me, personally, it presented the exact opposite message. I know this book is a celebrated portrayal of autism; it’s a bestseller; it’s been praised every which way. It might be a deeply sensitive, well-written book, a warm and meaningful experience for countless readers. All of that was irrelevant to me, because the main character’s parents are terrible. They do awful, awful, awful things, and it’s implied that it’s because his condition was so challenging for them to deal with. His autism made them worse. I couldn’t bear it. Oh, I know there’s a lot of realism going on there; marriages are frequently strained or broken by special-needs children. I already mentioned my fears of becoming the worst version of myself. I’m not denying those fears. I just don’t want to read a book where all those fears play out in vivid, vivid detail.

Clearly, this is not a universal experience. As it happens, my husband enjoyed the book. It’s not the parents’ story; their dysfunction is peripheral to the main character’s growth and development, and he liked that character’s story. But for whatever reason, I couldn’t get over the parents’ messed-up lives. Both opinions are valid. I don’t have to like the book just because lots of other people do, including parents of autistic kids. I don’t even have to like it because it’s well-written. It’s not for me.

The Speed of Dark was a very different experience. I came across it in a bookstore shortly after our son had been diagnosed and I was feeling very morose, particularly after perusing the parenting shelves that were full of cheerful guides on how to raise your child to be perfectly well-adjusted. Even the books on autism seemed to focus on high-functioning, verbal kids, and I just felt so alone. I didn’t need advice; I needed a story. And I found it, written by one of my favorite authors. It wasn’t until then that I learned she actually has an adult son with autism. Obviously she drew upon her on personal experiences and viewpoints in the creation of her story, just as I did in my reading of it.

It’s a book with a lot of ambiguity. Set in the near future, it addresses some pretty intense issues. Is it right or wrong to seek a cure for autism — is it wrong to even call it a “cure” when it’s just a different way of seeing the world? I’ve seen reactions to the ending ranging from exuberantly positive to deeply negative, which seems to indicate that Elizabeth Moon struck a peculiar balance between portraying the main character’s choice as either right or wrong depending on your own personal perspective. My daughter read it recently and said it was a sad ending. I think it left me more contemplative and wistful than sad. But it was what I needed at that time in my life. I understand the criticisms I’ve read about it. I understand the frustration that too many books about autism focus on a cure plot-line rather than almost anything else. I wouldn’t object to the wider inclusion of autistic characters in stories, because the more variety we have, the more likely chance of finding one that strikes the right chord with an equally wide variety of individual readers.

The important thing is recognizing that your personal response will rarely, if ever, be universal. And that’s just fine. It’s still no more or less valid than anyone else’s personal, fully subjective reaction. It’s always personal.

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2 thoughts on “This Time, It’s Personal (But it’s always personal)

  1. I can relate to this so much. Growing up, we couldn’t watch most movies about the military because my father (an officer in the Air Force) would grumble and complain about it all the way through; after he went to war and came home with PTSD, he often couldn’t even sit through the more violent films. Later in life when I went to law school, I suddenly had a difficult time watching and reading most portrayals of legal issues and courtroom scenes without rolling my eyes. About the only exception was the original Law & Order, which generally does a fantastic job. And now, with nearly 10 years of government service behind me, it can be very difficult to read or watch stories about things like the CIA (all those fancy gadgets, YEAH RIGHT) or political thrillers (conspiracy theorists give people far too much credit at being able to keep a big secret like that). But I also enjoy writing stories, and I know sometimes that being perfectly accurate doesn’t serve the story. A TV episode in which a character is wrongfully convicted of death HAS to rush through the process, because the trial itself isn’t the point, it’s the escape and search for justice afterward. A complex political issue HAS to be simplified sometimes because your audience isn’t familiar with the years of history and dozens of people involved, and you don’t have time to give them a dissertation on the topic. Finding that balance between respecting the reality of certain subjects in a story and how to frame the narrative to support the story you want to tell is a big challenge. And there is always going to be someone who thinks you didn’t hit it just right. But then if you have one person who is genuinely touched by that story – well, it’s worth it.

    • Thanks for reading! I guess the old saying is true, as clichéd as it is — if you try to please everyone, you’ll end up pleasing no one. You just have to write what’s meaningful for you and hope it’s meaningful for someone else out there too.

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