Dang – I hate going to the gynie! I hate going to most doctor offices. I hate sitting in places where I can’t lay down easily. My GP actually has the best office – it has a couch, and it is not in an inviting place. You can see the TV from it, yes. But you are front and center for everyone who walks into the office – so most prefer to sit in the more anonymous section with the hard seats and wooden arm rests. Works for me. I sign in, and lay on that couch.
I don’t really care what others think about that. It reduces my pain levels dramatically.
I lay down at movie theaters too. I have to go to a theater where the arm rails will raise up to remove the barrier between individual seats. Then I lay down a cover of some sort, lay myself down down and enjoy the film. And, yes, I have to sit in the front row to do this. My local AMC has two front rows – the first one is in the “I couldn’t see the whole screen if I tried section”, and the other is further away at a reasonable viewing distance.
Once I did this, and some unkind ablist made a special point to come to me and tell me I was lazy. I try to be forgiving of ablists – I was one once – so I know how easy it is to be thoughtless and unthinking. So when these things happen, I take a breath, shove my first thoughts aside and explain my situation.
“Nonsense!”, she said loud and abruptly. “I am getting the manager.”
“Okay”, followed by my inside my head voice with “Do what ya gotta do lady!”
I mean, what is the ‘manager’ going to do? Throw a disabled person out of their theater? Apparently not. The manager came, looked, and left.
The lady, intent on seeing the same movie in the almost empty theater returned and made a point to walk in front of me again so she could say to whomever she was with, “That one, there!” in a not so quiet whisper.
But it’s not me, so it’s probably you. Not all disabled folks need or can use a wheelchair – even if that seems to be the universal symbol for us. Myself, I lean more toward braces and laying flat – it’s what my body does best. I gotta move every hour (now they are suggesting every half-hour would be better, so I need to change the alarms and see if I can get anything done without losing my train of thought in 1/2 hour bits).
See how I already lost my train of thought there?
Anyway, this is how I have come to perceive much of life.
Is it Me, or is it You?
Is this My stuff, or is it Your stuff?
Did I hurt You, or are You blaming Me because I am not what you would have Me be?
I try to keep My sidewalk tidy. I mean, it’s not like it is never me…so…
I believe in apologies – they’re okay if I really want to let you know I was wrong and I don’t want to treat you, blame you, hold you accountable for my crapola. My crap is mine, I need to deal with it and not spew it all over everyone around me. Generally, disabled, in pain or not – people don’t abide by apologies so much these days.
But in a society where I am judged my most everybody as either justified in my belief I am disabled (it’s not a belief, by the way, it is my reality) or faking it – I have somehow come to this concept of it’s either My stuff or Your stuff.
Within the disability community, and perhaps with some family members, it can be Our stuff. The dynamics of personal relationships absolutely alters things, as does the common experience I have with other people who deal with many of the same things I do within our government, society (oh, yes, those are two different things), media and science/research venues.
But mostly, day-to-day, I am trying to decide if it is Me or You causing tension.
When I first became disabled, I admit, I was mostly causing the tension. I was trying to assimilate a disabled life into my ablist mindset – it just doesn’t work. My mindset had to change. So I worked to do that with help from a positive and empowering support group (isn’t that what they’re supposed to be?).
Even after I came to accept my body wasn’t the same as it had once been, but I was still able to live, enjoy things, appreciate the people in my life, contribute in some way to the process of life and so on, there was still tension.
Sometimes I would own it, call it My stuff. Now don’t blow a gasket or anything, but somehow I thought it was ‘understandable’ that my condition made other people uncomfortable and I should be more forgiving and understanding at how unnerving being around me could be.
This is how crazy ablist thinking is. See what happened there? I accepted I was different, found that it wasn’t the end of the world, but thought I should overtly accommodate all the able-bodied folks out there with their difficult lives who simply can’t get their heads around the possibility of being me, or, in some cases, of even being around me.
That is still ablistic thinking on my part. That is MY stuff. So I work to shed it. It doesn’t mean I need to be rude or obtuse or have overly-high expectations of how able-bodied folks should treat me. They are doing the best they can, as am I. But it changes my ambivalent acceptance to opportunistic education time.
I believe in educating people about my life and my experience – what it is like to be me. I think we should all do this, not just disabled, queer, gay, lesbian, Latino, black, Native American, Jewish, Hindu (you get the picture, right?) folk – we should all do this for each other. We have words to explain this process: Communication and Identification.
When we can identify with each other it is a good thing – we are more human to each other and as a result we consider each others needs in addition to our own. But I can’t identify without communication. I can’t guess what your experience is (I mean, I can guess, but I will probably get it very wrong). So tell me what you are feeling, what you are about, what you believe in, what makes you You.
Cursing me, avoiding me, being condescending to me does nothing to help me understand your experience, except (and this is a biggie) I suddenly know You have issues (I have issues too, but Your issues with me move you to treat me disrespectfully). The best way I know to combat this is to educate you, if I can.
But if I explain why I am laying in a movie theater across three chairs and your response is to have me thrown out? Well…education time is over. I won’t waste my breath. I have been around long enough to know some folks are just stuck in their hurtful, hateful, judgmental thinking. Since I’m not God or a conveyor of mystical spells, there is nothing I can do to change those folks except to be honest and be me.
The rest is their stuff, not mine. I won’t own it, I won’t change for it, and I won’t lower myself to their behavior to combat it. I’ll just put a little light around them, say a little positive thought for them, maybe even try to give them a mental hug (if I can bring myself to do that – cuz it does hurt when folks are rude and sometimes the mental hugging business is just too much for me right after receiving their ridicule…)
Then, I move on. Because if it’s not Me, it’s You – and I can’t force You to change, to love, to care, to consider, to think, to learn, to be open, or do anything else you don’t want to do. I have done my duty to communicate what is going on with me and why I am doing what I am doing. You have been unable to hear that message or identify with it. So peace to you my friend, but I need to move on now. It’s Your stuff, you can keep it as long as you wish – the rest of us will move forward without You.
P.S. — If you ever change your mind though, if you ever come to an awareness (like I did, though it took disability to get me all the way there), reach out to us and we will welcome You – we need You and we never hated You, we just couldn’t spend all our time obsessing over You.