What was startling to me was the actors' relationship to the director as disabled people. The director is able to reveal her performers' perceptual differences through abstract scenes and comedic sketches; she helps the audience step into the world of people whose taste and touch are more primary than their aural/ocular senses. But when one of her actors remarked he was tired of performing pantomime, I was initially repulsed by her reaction. He wanted to do a Gorky play. She asked how the actor planned to perform Gorky, when he couldn't see, hear, or talk. The actor responded that he didn't know, that it was the director's problem. The director responded, "No, it's your problems. You are the deaf and blind ones."
I slammed my paper down on the kitchen table. I walked around the house and cursed a bit. How dare she tell him what his problems are?! He already knows what his problems are, he lives with them every single day, and now this woman who's been brought in to support his work, who doesn't experience half the troubles he likely does just trying to get out the door in the morning, she's out and out told him he cannot achieve what he wants to achieve! After pacing around for a while, I returned to my morning coffee and the article. I was bringing far too much of my own baggage to this piece, clearly. I needed to see the creative enterprise for what it was, not for the touchy-feel triumph story I wanted it to be, as a hard of hearing woman and theatre artist.
After all, the director couldn't really be dismissing her collaborators. In a way, her matter-of-fact opinion could even be called refreshing, in the sense that it involved no pity or condescension. She basically asked a deaf and blind man to solve his own problem. How many people would feel okay doing that? Furthermore, her expectation that his problem is something he must solve, and no one else, puts the onus for personal responsibility on him as a man, not as a disabled man. And isn't personal responsibility something we could all use more of?
Fast forward a few more months. I have purchased a copy of Andrew Solomon's Far From The Tree, an exhaustive study in how illness can either be used as a marker of identity, or a marker of shame and social marginalization. In the book's opening pages, Solomon wisely points out that, while he's had his eyes opened to a great many things doing the research for his book, he still has his prejudices. For instance, after meeting a blind woman who was upset that her husband admitted he'd be relieved if their child was born with sight, Solomon pointed out he didn't understand her problem. He would rather be clinically depressed (as he is; it's a condition he has written about previously) than go blind. That is his hang-up. This was his warning to the reader that he is open-minded, but everyone has things they can't comprehend, and he must take responsibility for his own issues. I appreciated that admission at the time, and it helped me get through the chapter on deafness, where I felt Solomon had a hard time cracking through why sign language and Deaf culture might need to be sustained on a larger scale. (Overall, this book is as compassionate and thoughtful as anything I've read; Solomon allows people on the edges of society -- due to physical and mental difficulties -- to share their experiences at length, so you understand better how others adapt and fight to make their way in the world.)
Fast forward to this evening, where I come upon a Howlround article entitled "The Affects of Disability Portrayal and Inclusion in soot and spit." The author, Alice Stanley, examined Charles Mee's latest production, down at Arizona State; the play itself is not narratively coherent, in a conventional sense (I know none of Mee's plays that are?), and features discussions of things as varied as obsessive compulsive disorder, deafness, and autism -- oh, and also the Morton Salt Girl comes to life at one point, too. But the play's most striking facet for the author was its use of actors with Down Syndrome. I'd recommend reading the full essay to get the gist of what I'll be talking about here, because I finished the article and wanted to scream. (So I may be incoherent here for a while.)
I wanted to scream at the fact that Howlround, an organization I greatly respect, didn't ask for more than a piece about how disability is difficult to portray. Of course it is, because there aren't many disabled actors working out there, are there?! (But that's an issue for another post.) Granted, a piece about one woman's reaction -- though she definitely admits her ignorance of disability issues up front -- to seeing Down's syndrome actors onstage provides telling indications of how uncomfortable we are when confronted with disabled people in unexpected spaces. But then the article somehow also excuses those feelings, and shifts the blame for any discomfort squarely onto the shoulders of Mee and company.
Of course, Stanley is right to be concerned that the play could equate all disabilities, especially if the work doesn't given her the tools she needs to dig out its meaning. But using precious article space to state one's embarrassed reactions to merely witnessing Down's Syndrome actors struggling with text proves the author might be missing the point already. (Of course, I could be waaaay off base here, but I'm going with my gut reaction.) Because you know who probably doesn't care about flubbed lines? THE ACTORS IN THE PLAY. They are performing lines, not being asked to perform their disability.
Because guess what? You don't perform disability if you have one. You're never going to be a standard issue portrayal of your disability, because there isn't one. And if this play is offering that, or the viewer is taking that away from the play, then all sense of individuality and personal responsibility between creator and the culminating audience is lost.
More often than not, if you have a disability, you spend all your time trying to PERFORM normalcy, because that's what society expects from you. Society has taken steps to anticipate and serve your needs, but ultimately, society still expects you to pull your weight. Because you're a person. Because you're a citizen. Because you've spent your whole life accommodating others, so they don't feel embarrassed/overwhelmed by you and your difference. So they know how to approach and interact with you, even if it means you feel isolated from who you are because they don't know this big part of your life is getting up in the morning and putting a hearing aid on.
All this to say, concern about disabled people being exploited is all well and good, but to worry that disabled characters "pull focus" simply by existing in a less-than-disabled make-believe world does nobody any good. Why shouldn't disabled characters pull focus? Why shouldn't they fill up every nook and cranny of the stage? That's a better set of questions to ask, because lamenting the existence itself gets us nowhere. Let actors act and deal with your hang-ups on your own time.
In comics, there is a phrased bandied about that describes leaving something to the imagination: "Leave the blood in the gutter." The gutter is the little gap of white space that accounts for all the shots not drawn and inked within a six-panel page. A good filmic example of leaving the blood in the gutter is the shower scene from "Psycho." We never see the knife enter the flesh, but we know it has. Truthfully, I never gave the gutter much thought, until I read the work of fine artist/comics collage-maker David Mack. It is he who unlocked the potential of unspoken or unseen things for me, simply by having Echo, the one deaf character in the Marvel universe, pronounce "It is in the silence between the notes where you will find me," while playing the piano. Here, Echo stakes her claim as a deaf woman, and goes on to share her five senses with us; she invites others to follow her into a silent world, and she doesn't let go of your hand once you begin the journey. In short, she doesn't perform her disability and leave it at that. She's not there to "represent" anything but herself. She unspools her life for us in surprisingly personal imagery (lots of childhood drawings and scrabble tiles), and enlightens us just by being, just by existing, just by doing.
You don't perform disability. And even if you did, that doesn't make the world at large conform to your scatter-shot view of it. Because, really, normal folks -- t's your world. We're just living in it. And that's far more beautiful and painful to watch than you could ever imagine. So, if you want to know about the experience, ask. But don't ask on your terms. Ask for ours. That's the responsible thing to do.