disclaimer: Swears ahoy! Rage can do that. Sorry
So. I was going to write my five pages, and tell you all about it. I was all excited, our first little steps on the final leg of the journey. And then my love sent me this:
Let me just say, I haven't read everything linked here, but I got the gist of the situation. I apologize for not being thorough. I went essentially stupid with rage, after I realized what all of it was about, and couldn't stomach everything. I promised myself to make this blog about my literary and artistic endeavors, and not about the Brave StruggleTM or my politics or my day to day. So um, let me just, try, here, to circle this back from the complete WTFery of how this is screwed up so blatantly and wrongly that I should not even have to point out how blatantly and wrongly it is screwed up, and focus on the points of this that make sense from an artistic and literary standpoint. Because truthfully, if I focus on everything that is SO VERY WRONG with all of this, I will digress into incoherent babbling and nonsensical rage. Again. And let me say right now, I am not going to talk about the wrong inherent in the fact that these apparently fictional conjoined twins were sexually abused. Not only is that part taken off the Myspace to avoid further backlash (with the promise that the whole, sordid story will be available to those willing to pay for the CD, mind) so I wasn't able to read it, but also, I am one of the few and fortunate disabled women who has never been sexually abused or exploited, though I'm not naive enough to believe that was for lack of trying. I, unlike certain other 'artists' do not like to presume to speak for a marginalized group of which I am not part. My heart goes out to those of you who do know that hell, and were also hurt or disgusted by all of this.
So. In film school, they teach you that everything you put into a script and on the screen, everything has a purpose. If life worked out this way, it would be a lot less complicated, and we would have a lot more excuses for our bad behavior. It doesn't. Real life just is. Even if you are part of a religion that believes we are born with a set path (I am not, so, sorry for my callousness,) you cannot presume to know what that path is And certainly, you cannot presume to know for somebody else. So let me make this clear. Once, because once should be enough.
We, as members of the disabled community, do not need you to represent us, artistically or otherwise. We need to be given the opportunity to represent ourselves. We do not exist to provide you something interesting to look at, dissect, discuss, or parody. We do not exist to provide you with thinking points or talking points. We are not a theme. We are not the gun on the wall. We are not here to make a point to you about the preciousness of life, the resiliency of the human spirit, or even how fucking weird the world can be. Our lives are not made meaningful by enriching or educating you. We do not need you to make our lives meaningful. We are not unique because we were born with more apparent flaws than you. We are unique because we are people and every person is different.
The thing is, it's not cool to pretend to be disabled. It's not cool when actors do it on TV or movies. I understand, from an objective standpoint, why a severely autistic person might not be able to play a severely autistic person. But every time I see a sighted person playing a blind person, or a person in a wheelchair when I saw them just last week walking on another show, I get the rages all over. Because not only are you taking jobs away from the community of artists with disabilities, you are sending a clear message:
Nobody wants to look at you. The only way we can make this acceptable is to remind people it's not real.
We are real. We're not quirky or creative or interesting based on what our bodies or brains do or do not do, because we do not make those choices. You are not creative or especially interesting if you have red hair, even though red hair is a recessive gene and that makes it rare.
This is part of what bothers me about the whole Evelyn\Evelyn mess. That Amanda Palmer's defense seems to be, from what I can glean from the Myspace and recent response, that she just thought it was 'interesting.' It's not interesting to be a person with a disability. Further, you don't get to decide what disabled is. Her saying other people thought it was the most creative and interesting idea ever does not take away from the fact that it is wrong. Concepts can be morbid and strange and intriguing, and still not something you'd actually want to see. People can be creative and fascinating and cutting edge, and still be over-privileged assholes who don't see what they're doing wrong even when someone points it out to them. Which, um, is pretty much what happened.
And conjoined twins? Are born with disabilities. They are born without fully functioning independent bodies. They are not inherently flawed or inherently bad. But their bodies do not work the way they are 'expected' to, the way the world is made for them to work in. And no, many of them probably don't feel like people with disabilities. Guess what? Neither do I! Shocking, but I don't wake up every morning and go, "how will I ever manage brushing my teeth and flossing today, let alone going to work?" I just do what I have been doing for the past 20+ years, and make this body do what it needs to do, the best I can. There are days when I accidentally grab the door handle with the wrong hand, and then remember, "oh right, the door's not too heavy. wrong hand." There are days when I can walk the 40 or so minutes home from work, and days I just don't want to make the effort. I function. I get bitter, I get angry, I get the rages, when stuff like this comes up. I get exhausted sometimes too. And sometimes, at about 3AM, I think about how I deserve more, and how much things could be different. Who doesn't?
The bottom line: We are not a metaphor for anything. We are individual people facing unique challenges, that can either be ignored or glossed over, or blown out of proportion for the entertainment value of people who are never required to deal with us head on, the way we are forced, every day, to acknowledge and accept that we are not worthless, no, but we are most certainly worth less. And really, we should have known that.
When you pretend to be a cliche of a disability, you are not doing it to be avant-garde. You are not doing it to make a statement about us. You are not doing it because you find it 'creative' or 'interesting.' You are doing it for the freak factor. You further the idea that the best we can ask for is that it will one day be okay to be a freak, when what you could be doing, is standing next to us in support as we explain to the world that we were never freaks to begin with. I meant what I said before. What makes me different and interesting is not in my body. It may be in my brain, but not where people are looking. And it's tacky, childish stunts like this that make screenwriting professors look at people like me, and tell us to change the story, because no one would ever believe an average guy would fall in love with a woman with a mental disability. It's stunts like this, and people like you, who make it impossible for us to tell our own stories. Ours are true, but yours, well. You do know how to draw a crowd, don't you?
And if you are one of those people, I don't care how talented or interesting you think you are. I f*cking hate you.
(more to come on the actual project, promise.)