Wednesday, June 1, 2011

To Violently Induce Empathy

I originally wrote this in May, 2010, when I felt particularly injured by people in my life that just were not getting it. I think that acknowledging when I feel like a bitter, embattled bad crip is important. While I was busy drawing analogies, I lost site of how violent this post really is, so you have been warned.

Originally posted elsewhere on May 7, 2010

I needed to get this out of my head.

Some days I am almost fine. I get up early, I get stuff done, maybe I go out, and maybe I fuck. These days are rare.

Some days I am incapable of almost anything. I stay in bed, or turn the couch into my bed, and veg out to news so I do not feel totally disconnected from everything. I do not fuck with anything on these days, nor do I appreciate getting fucked with by anyone. I can barely move, I can barely read, I have almost no recall and can barely follow a conversation. If I am actually trying to do something while like this, then I place a great amount of importance on whatever that may be, and even then I will probably screw it up.

Most days I am somewhere in-between and either blow all my spoons far too early, or end up doing very little "in case" I need my spoons later that day.

Only if I place a great deal of trust in you will I tell you what kind of day today is when you ask "How are you?” I am so tired of being shut down by people that ask how I am but do not really give a damn.

I "pass" most of the time. People do not know I am disabled unless I tell them. Yes, even with the cane -- this is weird to me. So when I go out with the wheelchair it is almost always a gimp circus. People think that since I do not look disabled (whatever the hell that is supposed to mean!), that I must be faking or something. Fates forbid I actually stand up out of my chair for any reason.

I am tired of being a "good cripple."

Don't touch my wheelchair without gaining my permission first. Do not imply it must be nice to "sit around" everywhere. Yes, I can make those jokes, and you can laugh when I do if you want to laugh. Do not explain to me how good I have it, or how bad you feel for me. Just like I do not get to appropriate the experiences of a person with Autism, you do not get to appropriate mine with lupus/SLE and chronic pain (and SI joint dysfunction, and compressed disks, and non-specific brain damage, and...). Do not lecture me about my behavior, my drugs, or my coping mechanisms. Do not excuse places that are not accessible to me, or accessible to the people that society has labeled the same as me.

Do not "congratulate" me when I am not in the chair. I know you mean well, but just stop it. I may be having a good day, or I may be someplace that simply would not accommodate what I actually need that day.

Do not tell me you know "how I feel" unless you really want to. While there would be no complete equivalent, I could give it my best effort...

I cannot fuck with your genes to make your body attack itself, but I can take a baseball bat to your chest, your lower spine, your SI joint. If it is a rainy day or the weather fronts are changing, I will just wail on every joint you have from your knuckles to your toes to your spine. I will wrap your head in batting so tight that the very thought of light in your eyes will make you cry. I will stuff your ears so that you can barely hear, and cannot make sense of the things you do hear -- only later to remove it all and subject you to such noise that you long for the stuffing. I will knock your legs out from under you when you try to walk, move everything so that it is just out of reach, and recite long numbers as you try to remember your address or someone's birthday or phone number.

I will alienate your friends and family, canceling important events without notice or apparent cause. If they will not come see you, then fuck them because that is the only way you will socialize most of the time. I will make you doubt yourself, the people around you, your ability to do or think a damn thing, and then make you feel bad for being angry about your situation. I may let you go out every once in a while, but I will fill that time with so much fear, doubt, and shame that you will wish you stayed home. Your doctors will become your only major contacts outside of your home, and even then I will not always let you go -- and only the really good ones will even listen to you, let alone believe you.

Whatever heaven you believe in help you if you dare shut me down and try to pretend everything is okay. I do not get to do that, so neither do you.

Most folks that will actually read this never have to worry about any of it. You are kind folks that express sympathy without pity, and accommodate without fanfare -- and as you can probably see, that means a lot to me. This just would not leave my head and I needed to rant.