I titled this one after ZZtop's song, "She's got legs". I drew this the year I started illustrating my journey with my rare condition (GNE Myopathy) in 2011. At the time I was living in San Francisco with leg braces and a cane. I had names for my assistive devices but I forget them now.

A woman that is sexy has to have a great pair of legs and then some. So we're told.

The text on this illustration is not how I view myself, but how society can view us. 

This illustration came to mind in the summer of 2010. It was hot. I saw a woman cross her legs and as I subconsciously tried to mirror her and cross mine, I couldn't, at least not in a natural way. My husband has to help me cross mine and even then it was difficult because I wore clunky milky white leg braces. Sometimes I imagined my braces shattering into dust behind me as I run and broke free from this rare disease. Just like Forest Gump did. My mind often flurries. It’s where I see my drawings. I have a hundred flurries every week and often wish I could draw fast enough to capture them all.

A female GNE Myopathy patient (or any other disabled/ill person) experiences a different kind of loss than a male does. There are things that each person misses and I am sure feel less than because of it. A woman losing her hair to cancer, a man not being able to carry his wife over the threshold, a woman not being able to hold her baby... But these acts, the clothes, the car, the skin doesn't define us. We all know this, but knowing and living it are two separate facets.  

.   .   .

In 2010 I could manually lift my heavy leg over my left leg and voila, they were crossed.  It wasn't particularly graceful, more like a slow motion magic trick, but I could do it with the assistance of my hand. In 2011 my legs became even heavier, leaving this tactic irrelevant.  

I remember watching this woman called for my attention and without thought I naturally wished that my body could still do these things. These simple moments seemingly represent gender or confidence. These movements allow us to express ourselves physically. To society body movement is such an important form of language.

When I visualized this illustration I mentally broke down the step-by-step motions of a woman crossing her legs, combined with the environment or social nuance of the moment.  It looks sexy and confident. I recalled the memory of crossing my legs with ease and not only how it looked sexy, but felt sexy. The ease of lifting of a limb that ends with a pointed shoe as the underside of the calf alluringly brushes over the left knee, right before both thighs meet as they rest and conceal themselves underneath a free flowing skirt feels sexy.

But my legs feel heavy, like a pile of bricks constantly stacking on top of each other. As I progress I get heavier. There's nothing elegant, light or airy about me. My limbs feel lifeless and I often envision a hill in the shape of my body with gravestones on top. My body often feels dead, but through the years I’ve learned to befriend her for it’s not her fault this is happening. She weeps when I weep.

.   .   .

When I first started using leg braces, I hated it. I did everything to hide them and only wore pants. Because these braces were so big and wide I could only wear an ugly pair of sandals I wore for 9 years. Fortunately, leg braces look much better today.

I hated my progressive limp and if I was in my car I would wait to exit when no one else was around, especially if a cute guy was in sight. As I mentioned, there was and is nothing physically graceful about me so it looked as if I was dragging someone else’s body out of my car.

Obviously, intellectually I know this projection is ridiculous and crossing my legs, wearing the trendiest fashion or carefully picking out my image from hangers or a makeup table does not in any form correctly constitute confidence, womanliness or capabilities.

Still, it's there. Society expects these things and we are graded accordingly. It's all perception, including our own and it's a continuous self-workshop in understanding ourselves, and that it is ok. We collectively tend to place idealisms and worth on social aspects, genres, social groups and not on the individual form. Society does it to us but then we ultimately allow ourselves to be jammed into bound boxes. Not just women, but men also.

But with time I’ve become more confident and care less about what people think. Sometimes I have an off day but in general I’m more self-assured than I’ve ever been. I always say it’s not the image of me in a wheelchair for life that I care about; it’s the progression that is so damn hard.

.   .   .

All women have this pressure and it’s our job to dispel all we’ve been told since we were born. But disabled women have an extra layer of what society projects onto them.

To the public we are usually considered non-sexual and while the public is more aware that “hey all people can become disabled, including me” we still view disabled as objects of care, perhaps confined to their homes all tucked in, safe in their bed - void of thoughts and dreams.

While the perception is getting better due to increased disability advocacy, which owes a lot to social media, I still see this sexy perception applied to girls in a wheelchair.  One type of disability advocacy from disabled girls is plenty of photos of themselves perfectly dressed in full-on sexy glam face and outfit, sometimes crotch straddling a chair or in some contrived sexy pose. While I’m happy people are aware that this can happen to “the beautiful”, too (I’m often told by strangers I’m too beautiful to be in a chair as if disability and illness is reserved for the “non beautiful”. Pure ignorance.), it’s still an image of women being sexy in order to be a woman and it just isn’t realistic for the vast world of disability. Most disabled people can’t transfer independently, let alone straddle their own chair. So once again, our world is prefaced by sexy girls in chairs who have been fetishized. This is not the full and accurate portrayal of those who are disabled and the life we live. I’m not saying disabled aren’t sexy and shouldn’t try to feel or be sexy but it’s not everything.

Regardless, society is becoming informed and you see all sorts of disabled on fashion runways or representing corporate fashion and that’s because the industry finally sees the disabled sect as profitable this relevant. There are one billion disabled individuals in the world. In 2015 there were nearly 40 million disabled Americans. We have significant purchasing power. It’s funny how many times social progression is allowed when the corporate world accepts us as a viable market.

.   .   .

While things are getting better, we are still often viewed as the “brave” or “tragic” and I cringe every time an article written on me resorts to this trite, pitiful and tragic angle of my story instead of who I am. It’s as if we are back in the old days when the perception of disabled is to pity. Except in those days disabled were abused and locked away out of society’s mind or in a more horrific example during the Holocaust Hitler decided it “was the best time for the elimination of the incurably ill” and ordered doctors to euthanize us over ignorance and fear. It was for the good of “normal” society not to look at us.

In ancient Greek and Roman times society saw any form of mental and physical impairment as a tragedy or curse, believing it was a punishment by the gods. We were viewed as “useless”. In modern western city, while it’s getting better, we are projected as weak, helpless victim who are  powerless and an object of pity.

For much of the 20th century, it was common in the UK and USA to segregate disabled people from the rest of society and truly horrific things happened to us and we were left with no dignity, no choice and in many cases the physically and mentally disabled were regularly physically and sexually abused. In fact this sexual exploitation of disabled in institutions is still prevalent today. These institutions just like orphanages can be breeding grounds for predators and molestation is common. It’s quite common…look into UK’s darling Jimmy Savile and all the disabled children he had access to and molested some 500 victims while the state looked the other way... 

In the future I want to share more of how the disabled were perceived and abused. It's important for us to know and understand history so we don't repeat. It’s important to realize the things we feared before, are seen as ridiculous and normal today. Remember that when you place your fear and ignorance on groups of people. In the future, you will be seen as ridiculous as well and outside the social norm.

.   .   .

With the increased heaviness of my body what I have lost in body muscle has journeyed to my mind.  My womanliness has transferred there.  It was always there, actually. I'm not saying we shouldn't enjoy all the typical tropes, I'm saying we are beyond this image and we can transcend our labels and gender and what is expected of us. We are humans first and we can write our own worth. It's not for society to tell us who we are.

In everything, be thoughtful and find new ways to accentuate your original self and accept that what you are is ok, indeed. No need to fit into a mold.  Being too narrow about anything breeds sameness. It's good to grab a number of influences and many times these "influences" are things we've subconsciously filed, but have a difficult time surfacing because of the things we think we are supposed to be. The things we experience and see are all a part of our very own original story and I guess in the 18 years of living with GNE Myopathy, I’ve learned to embrace, mix them together and release them into my own work, self and dreams.  

So, even though at times it feels like I've lost my physical grace and feminine expression due to the loss of my legs' function or the hands that apply makeup, I know it is not these things that hold my image, yet it's because I can't do these things and what has resulted because of it that really add the pages to my own book. All that is waiting is for us to author and accept it.

Don't listen to mainstream, be yourself whether you have crutches, cane, chair, prosthetics, walker, tracheotomy, ileostomy and more. It really doesn't matter what others think of you. We need to find it within ourselves to be ok and happy with who we are. If you're not ok, then no one else will be ok with you. 

Life keeps throwing curve balls at me. Had some major setbacks this week but I'm still working on getting better and hope to post my newest drawing next week. Have a great weekend, everyone! Thanks for taking the time to read my stories. xo

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