Dancing with Limited Mobility

I miss dancing. It was one of my jobs, but just as writing is like breathing, it was also a part of my life that I thought I would have forever. I started dancing when I was three, my Aunt’s daughter taught Ballet and we had lessons. I remember my pride at being able to lift my leg high, and the motions, the grace. I felt like a fairy princess during every class. I never wanted it to end. It did.

My father decided that dancing was just too good for his children, so the lessons ended. The ideals and memories did not fade. I discovered Belly Dancing when I was 17, and I once again found myself moving to music. I could feel it in my blood, coursing through my veins and just as singing, it took over my soul. I could leap, I could twist, I could use my hands and my entire body to entrance someone, as I celebrated the life that is in music.

I was the healthiest I had ever been, and I finally had a job as a dancer. I was reading through the contract to sign on as a permanent dancer with a troupe when I broke my back. I knew something was wrong immediately during practice when I first lifted my arms over head and wanted to scream. I still danced, but, quickly gave up on it. I couldn’t make my body move the way it used to. I had lost the silken rhythms and was trapped in a world of pain. It was the first blow of depression. For a time I wanted to die. If I could not move, what was the point of living?

Four years, maybe more as my time line sense is skewed, and I find the music still stirring my body. Every time, if I twitch my hips slightly my spine begins to burn and I cry. I am failing to resist the lure of a simple beat. I can hear it in my head, my heart pounds and I want it. I cannot strike the poses from my modeling career, I cannot dance… or can I?

Thanks to William Shakespurr I discovered a new method for dancing. He has mastered the remote control just as Sprite has and was watching fashion shows. He has a love of the bright colors and I think it is the techno that is the latest in fashion runway modeling that draws him. I could not resist the music. Tonight after a satisfying, if exhausting Career Builders Toastmasters Meeting I flopped into bed and got comfortable. I left the TV going and reminisced.

I remembered walking on the catwalk, Striking a pose, my body in line, my face the face that the people watching wanted. My body the perfect display for clothing, to make you want to buy it. I struck a pose, laying flat. I crunched horribly but despite the protests of my frame, I felt free. It wasn’t nostalgia, my mind was not trapped in the past, it was just the giggling and playful side that I do not let out as often.

A commercial came on with music and I moved my arms, my back is supported when laying and so it doesn’t have me tipping out of my chair. I was dancing again. This is how I dance now, a fresh discovery. I can twist, I can move, without really moving. I can feel the rhythm and I am not trapped now. My limbs feel freed. I know there will be conecquenecs in the morning, there are already now with my hands refusing to respond as fluidly as normal. I am forbidden to move like this by my doctors, yet, I need it for my soul.

I will have no regrets tomarrow. I have none now, and I am free. I am dancing in the air, I am floating in the sea. Nothing can stop me, for the melody frees me. Twisting, twirling, weightless, and so alive. I burn, not with pain but with Passions that have long been starved. Model, Singer, Dancer, Teacher, Writer. Who I have been? Who I am.

The Wheels on the Butt Go Round and Round…

Today is a busy day, and I hurt enough to make me want to not just crawl under a rock, but to make the rock cry to share my pain. This tactic is not healthy but it is very human, so, I must chant the mantra today that makes me feel the best. “Centered, warmth, healing light, none other shall have to face my plight. I am strong, I am beautiful, I am capable, and my bed waits for me to finish my tasks.” A little long but it helps me get going with a smile. I am eating a delicious breakfast made by my Male Person of Awesomeness, while he showers. The cats are both coming on our adventures today.

This will be our first time taking William Shakespurr out with us. Today’s activities consist of Veterinarian, Bank and the oh so fun Wheelchair Repair Trade off.  The wheels under my butt don’t want to go round and round. Since the first day I got my scooter things have been falling off. Getting it out the door to the house the first time I clipped the wall and lost a chunk of the plastic frame. The second time it was better but I clipped a rock at an SCA event (pebble sized) and lost a bit more. A rattle started a bit later and here we are Six Months into ownership of my own Personal Freedom Mobile, and it is broken.

Man of Awesome loaded it into the van and bumped an empty cardboard box, and the box won. The lights died and now half the time it won’t move. The scooter seems to be defective! What a concept right? It has had power issues the entire time I have dealt with it, but, I had no way of knowing it wasn;’t normal to have it whine, vibrate, jerk about, and rattle. The death rattle grew worse after it stalled out in the new apartment. I hit the wall goooood, and broke the plastic frame, and the entire system died for eight hours. I used the wall as a pillow, since my bed wasn’t home yet and everything else wasn;t here yet. I was the first piece of decoration in our apartment, a wall fixture I might add.

All comedy aside, this experience gave me a new light on the scooter. While it sucks horrible in many ways, those ways are made up for by the fact that I can race someone to the car, and WIN. First time in my life. I don’t have to try and brace my bosom so that they don’t smack me in the face, I don’t have to worry about a dislocated knee, I can zip right out there and not even break a sweat. I also have the freedom of leaving the house by myself for the first time in years. I don’t have to hide in my room if I want privacy and solitude, I merely have to get rolling.

The Maiden of ButtWheel Repair has warned that I might not be able to get this particular chair back, and that I might want to look at other designs. What I truly want is just a wheelchair shaped item, no long nose, just a nice, cushy chair. I would need to add on a few particulars, like a basket for the cat to sit in, and my sunshade, but, after that? I could maybe make it around some of the walls in the apartment, or maybe squish into that store that is barely inaccessible. Scooters add to the inaccessibility issue facing stores and their handicapped customers, though they are great for some people.

I already miss my wheels…

Fat Wheelchair Lady goes Rawr

Before I started this blog I sent an email to Fatshionista. I did this because I didn’t consider writing about it myself on my own forum, and after they asked permission to quote the email Lesley wrote a beautiful post. It made me feel things, which of course happens often. I felt anger, relief, and then that flash bulb of understanding. Here is a link to the article, so you can read it too.

This made me think, and although I commented on the blog, I wanted to elucidate here. I want to devour the world in a way, to show them what is inside my head. Oh yes, I am fat. I never was a thin girl, I matched Marilyn Monroe’s size sixteen when I weighed a mere 120 pounds, but, I can still wear children’s gloves and hats.  It took me a long time to find body acceptance. Part of it was when I was over a size 32 and with in a day of cutting gluten out of my diet I miraculously shrank down to a 24. That was the poison vacating the premisis. I am a 22-26 depending on the cut right now, though when I eventually manage to save for that medically necessary and totally awesome corset, the size might change. It might go up, because supporting my 20lbs of breast tissue will change my shape.

My perspective on respect has been changing, I ruminate on it for hours on end, and I do know self respect comes first, but, is the disrespect towards the disabled not also disrespect towards the able bodied person? If they are so afraid of the concept of being like me, doesn’t that mean they hate themselves for the possibility of change? Is it really my fat or disability they fear? What if they fear instead, the reflection of themselves, the little bit of empathy?

What is it that the human mind has against change? Sure we elected Obama on a campaign of change, but, that was the lesser of the two evils for many. For others it was the bigger of the two. None the less, people fear change. Does my glamorous frame rolling into Walmart to buy a picture frame with my cat on my shoulder listening to my body for the warnings of a spasm from hell really mean you are going to be in the wheelchair yourself?

Does it mean you will someday have endocrine issues, dietary challenges, or a broken back suddenly spring upon you? According to medieval superstitious doctors, it actually does. Is this antidisabled world really still using a mindset from our self labelled DarkAges? I remember when I first read about it in school. I was in the room where they put the kids no one really wanted to deal with, the ones they feared, and I read a book off of the top shelf. It listed rare medical ailments and treatments from the middle ages, something i was utterly fascinated by, and stated that babies born with missing limbs, cleft pallets, and other visible defects, were maimed in the womb by some horror their mother saw. If the child was a dwarf, it was actually seeing another dwarf that made her child different.

In some towns in the US this belief is still taught from mother to daughter. I grew up in one of those towns, and at least my disabilities were hidden as a child. I just was percieved as a weirdo because of my hair and ability to twist my joints like no one else. I was literally tied to the tether ball in the playground and threatened with being burned as a witch. Good thing redhair means I have magical powers huh? There were few adults in my childhood who seemed to know I wasn’t a monster, and none of them were relatives. What saved me from being burned alive by my schoolmates? The principal thankfully knew better.

I was considered fat then too, I was only eight and now, as I look back I see I really just had a healthy weight. I had already started to grow breasts, which added to the appearance of heft, and being told I was fat by everyone, to try and demean me, caused me to begin to eat emotionally. I molded myself into the image of what the perverted thinkers told me I had to be. I cannot blame the media, but, I do blame society for that. I finally became healthy as an adult, but, then I broke my back.

Even now, I am justifying my weight to you, and to myself. I feel sexier than I ever have. I feel beautiful and when I was younger I never could say that. I look into the mirror and I like what I see, but, the wheelchair and the fact that my hour glass figure isn’t as small as a broom and that I am not anorexic means I am hideous? Hardly.

Lesley, at the end of the article states she felt like an asshole for exploring the question, but, to me she did something heroic. She faced her internalizations and subconscious fears of a difference in the world. If I was not disabled would I still be who I am? No. I am proud to say that when I was able bodied I did my best to treat even my disabled customers at work with equality, though, it may have been percieved as condescension.

The point of my rambling now, is this. I reject the superfluous nature of society, I reject the fact that people see ability and weight as one, and presume we all have the same issues. I am grateful I do not have the same issues as the rest of the world. Mine are not as bad as some, and are worse than others. Imagine if we had to share? The world would end.

For more reading on the topic of weight, ability, and social perception try these blogs:

Fatshionista: Ableism and Fat Activism

Shapely Prose: Exceptions that aren’t Just as a disabled person isn’t a broken able-bodied person, and a black person isn’t a darkened white person, and a woman isn’t a wangless man, a fat person isn’t just a thin person who ate too much.- Fillyjonk


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