I know everyone is sick of me talking about my health. It seems like all I ever talk about on here lately. I know that I don\’t do that in real life, because the few times I have gone out with or spoken on the phone with \”A\” or the guy I am dating right now, I have been monitoring my conversations: I don\’t bring it up. The guy I\’m dating occasionally makes comments like \”I can taste the Bio-Freeze\” or asks me \”Is this something you can do, or…?\” and that is the extent of it. \”A\” has a different tactic, asking me how I am doing and when I say okay, or that I\’ll be fine, or that I can make it home, he says \”Bullshit. How are you really feeling?\” and then drags it out of me.
I pretty much take the same tactic with other people outside of this forum. I don\’t really talk about it unless they are a close friend and ask me how I\’m doing. Then I fucking tell them honestly, or if they ask me what I\’ve been up to because they haven\’t seen me in so long and why the fuck not, I tell them the truth and say \”I haven\’t been up to anything, I\’ve been sick in bed.\”
Maybe I should lie. Maybe I should put on this whole \”I\’m okay, everything\’s fine, I\’ve just been busy,\” act. Maybe that\’s what people who are chronically ill do all the time. I don\’t want to fucking do it. I tried that for a little while and people kept pressing me, \”Why haven\’t I seen you, why can\’t we get together, you never call me,\” yadda yadda yadda, and after a while they started to get this idea that I was avoiding them because I didn\’t like them which is just not fucking true. Also, when I put on the fake happy smiley face, I kept getting this whole \”You\’re okay, I don\’t see why you need to be on disability, and by the way, here\’s this job that I know about that you\’d be perfect for,\” and I cannot tell you how absolutely shitty that made me feel, to have people constantly pressing this life on me that I was not and could not be living.
But it makes people uncomfortable to hear me talk about it, so I don\’t. And maybe I should just lie, but I feel like such a fucking liar with a mask on when I do. How can I tell people I\’m fine when I\’m gritting my teeth and my brow is furled and I\’m limping and grabbing a hold of the wall for support? I\’m so obviously not fine when I\’m like that, but people still seem to want to hear that I am. They can\’t handle an honest answer, they don\’t know how to respond. And that\’s fair. I don\’t need or want you to say \”I\’m sorry, that sucks,\” because obviously it sucks, and then you give me sympathy (or sometimes empathy), but I don\’t want your fucking sympathy. When I tell you like it is, it\’s so you won\’t give me shit or think I\’m avoiding you. And the proper response is then for you to tell me how you\’re really and honestly doing, because there is just too much pretending in this world.
What is all this shit about stiff upper lipping it on the outside just so people won\’t have to face reality? Fuck that. But that\’s what I\’m supposed to do, is obey the social mores and lie and tell you I\’m just absolutely fucking fine. That\’s what most people do, maybe that\’s what we\’re supposed to do to make society run and not have to face issues like illness and disability. But I haven\’t learned that lesson yet, if that\’s the lesson to be learned. Maybe lying about it is the reason illness and disability are still things people highly discriminate against, and feel uncomfortable around, because it\’s kept so much in the dark and people don\’t talk about it honestly. Maybe if people were exposed to it more often, and were truthful in their own right, then people would learn to accept, how to react, and how to not judge. Maybe, maybe, maybe.
But I try and keep a stiff upper lip unless someone asks, at least in real life. Here, in this forum, I write about it, I pour it out of me, because I am fucking teeming with issues on this subject and I have no other place to get it out of my system other than two hours of therapy a week, and I have about a hundred issues on a variety of topics, so there just isn\’t time to get all this shit about my health out. So it gets deposited here. I need an outlet. And you don\’t have to fucking read it if you don\’t want to, and you don\’t have to respond, but I need to get it out. Most of my entries go in my other journal, but sometimes I\’ll post one publicly here. In some weird way, it makes me feel like someone is listening, even if I don\’t know who they are or what they\’re thinking. Probably everyone is just thinking \”Shut up already, enough!\” and that\’s fucking fair, too, but god, I just feel like I need someone I can talk to, and I just can\’t do it in real life.
I\’m sorry I can\’t seem to write about anything else. I\’m sorry if I\’m letting you down. I\’m sorry if I\’ve been boring and more self-centered than usual. But jesus christ, when I\’m feeling my condition in every fiber of my body, I can\’t think about the goddamn war in Iraq as much as I would like — I\’m too distracted by trying to cope and figure out a way to get beyond the way I\’m feeling, to make it stop. I\’m trying to get to the point where I can not think about those things, and just ignore it and get on with life, but I am still fucking new at this and I have no idea what I am doing, no one to show me the ropes, and I am fucking trying, but so far I seem to not be succeeding fast enough for anybody but my therapist. I\’m sorry I can\’t be what you want me to be.
But on the other hand, fuck you. Stop being my friend, take me off your friends list, stop asking me how I feel or what I\’ve been up to, go on ignoring disabled issues while you have your health to rely on and enjoy, and I\’ll fucking write letters to my congressman telling him just why we need more money for things like public assistance, disability education and rights, more disability parking in public spaces, and to just stop being ignored because it makes people uncomfortable.
There was a little thing a few years back that had the same forced-closeted issue — and then they fought their way out of the closet and now we have these huge fucking corporate sponsored wank fests called gay pride marches. Well where\’s my fucking parade, where\’s my fucking march, where\’s my goddamn corporate sponsored hat with the little flag on top? I\’ll tell you where it is — it\’s hidden away because we\’re too fucking sick to march or we\’re trying to pop wheelies in our wheelchairs because establishments can\’t seem to get it in their goddamn heads that some people can\’t climb stairs.
I want to be able to go see a band that\’s too small to play a stadium, and I want to be able to:
- Get in the venue without worrying about flights of stairs I can barely climb or cannot climb at all, and I am one of the lucky ones who can sometimes climb, so even just having a ramp or an elevator to get in somewhere would be nice. At both the Black Cat and the Velvet Lounge, for example, you have to step up from the street to the elevated level of the club, and then there is no elevator once inside, so how the hell are people in wheelchairs supposed to come inside? It\’s not handicapped accessible. That\’s discrimination. I bet you never even thought about this unless you know someone in a wheelchair. I bet you don\’t even care. But this is the sort of thing you start to fucking notice when you\’re disabled, is handicapped accessibiltity to those who are even more disabled than you are. I\’m not so fucking caught up in my own problems that I don\’t notice other people\’s.
- Sit down in a venue at somewhere other than a bar that still allows me to see the stage. If you are mobile enough to be able to get into the Black Cat or the Velvet Lounge, there is nowhere to sit that provides these things.
The 930 Club does have a ramp for wheelchairs, but then you are on your own. I have never seen anyone in a wheelchair there, perhaps because once there they would have no place to go where they could see. As for seating, there is nowhere downstairs other than the bars and the seating for Food For Thought, the food concession inside the club. If you call ahead and say you\’re disabled, they put you on the list for VIP access. There are four problems with this:
First, you have to be able to get up the fucking stairs, because there is no elevator in the 930 Club, so if you need it and can\’t climb the double flight of stairs, you\’re shit out of luck. Second, once upstairs the only seating provided are bar stools, which you have to either be tall enough to sit down on or be able to hoist yourself up, which is something a lot of people can\’t do. The third problem is often times, there aren\’t even any seats available. The disabled VIP area is the same as the regular VIP area, and unless you get there super fucking early, the seats are full of people who had the connections to get VIP access. I don\’t know about anyone else who is disabled, but I personally feel like a dick walking up to someone and calling attention to myself by saying \”Hi, I\’m disabled, will you please give me your seat?\” especially when I don\’t look disabled. The fourth problem is if you were planning on attending the show with friends, particularly more than one, only yourself and sometimes one other person can get the VIP access on account of disability, so generally speaking you will have to sit there by yourself while your friends congregate elsewhere.
- Be able to access and enjoy a show without calling attention to the fact that I\’m disabled. I shouldn\’t have to wave it in your fucking face or call ahead to assure myself the proper accommodations. They should already exist and I should be able to anonymously access them at all times without the club having to to make special concessions per occasion.
- Be able to take a piss. There is no, I repeat, no handicapped accessible toilets at any of the aforementioned clubs. (If there is at the 930 Club, I haven\’t noticed it, but I know there definitely isn\’t at the other two places.) Some of us can\’t stand long enough to use a urinal, some of us need more room to operate in toilet stalls, and some of us need something to grab onto in order to sit up and down. This is not available.
I\’m sure there is more but off the top of my head this is all that I can remember.
And this is just for fucking shows. What about all the other things that people like me want to do? What about the things we need to do, and are unable to for a variety of fucking reasons that I am not even going to start to get into here because the list is just too damn long.
This is not a handicapped friendly society. This is something you start to notice when you\’re disabled. So don\’t tell me that non-disabled people are tired of and get annoyed when the disabled point out the fact that they\’re disabled for whatever reasons. Our voices need to be heard. Just as women, blacks, glbtqs and Jewish folk have had their day, we need to have ours, too. The discrimination has to end. We are just as equal as everyone else, and just as human, and just as entitled to a happy life with equal opportunities and treatment as everyone else. And we\’re in our fucking wheelchairs, our beds, and our doctor\’s offices, and we\’re fucking pissed, so look out. We\’ll have our day and we\’ll have our goddamn corporate sponsored marches with little matching hats, and maybe then you\’ll stop telling us to shut the fuck up.
But I\’m shutting the fuck up now, because I know you are all sick of me talking about being sick. I\’ll try and keep my mouth shut and I won\’t share or clutter your friends list with this shit again. But don\’t tell me you\’re my fucking friend if I can\’t tell you what\’s on my mind.