It is everything. It is nothing.

Online dating is fascinating to me. If you know me any bit at all, you’ll know that I love my Tinder both ironically and as earnestly as can be. For a while I thought it was because it allowed my ego to be stroked. Then I thought I loved it because I could hide being a person with a disability (PWD), but over the past year I have come to really love my disability identity culture. [Sometimes I think and what would my alternate universe abled bodied self would be. Well I can tell you this, abled-bodied Jessy would suck. Abled-bodied Jessy stayed in Ohio and never had to think about the cultural and structural that consequences surrounding life, because she would be in a place of such high privilege that she would never even understand the concept of marginalization. wow, i digress.] Recently, I’ve realized my love for online dating comes not from a place hiding my identity, but one of the ability to see inside a normative abled bodied identity. Whether I like it or not, it is the closest thing I will ever be to nondisabled. Additionally, the screen barrier allows for conversation that AB’s might feel weird having in person. Asking a person on the webz if they can have sex is much less awkward online than in the produce aisle, I’m guessing?

So obviously I expect questions and usually have witty answers for them all.
Can you have sex? “Ugh if you really want, but right now i’m lying in my bed, eating a bowl of ice cream that i poured whisky over. Maybe tomorrow, after I’ve waxed and bleached every square inch of my body.”
Does it hurt? “only my dignity when I have to downward dog up a flight of stairs sans handrail.”
Are there, like, any cures? “the man in the subway told me i’m not praying hard enough. I’m inclined to believe him.”

You get the idea.
But there’s one question that I get that recently sent me into an intellectual tail spin of Judith Butler and performative identity theory (something that for some reason guys on Tinder don’t find sexy????). The question is a simple one: “how does it impact your life?” I know the type of answer they're looking for. It’s an answer that is measurable to a person of ability. “I walk/dont walk. My speech and face are normal. I have no cognitive delays.” They are not really interested in how it impacts my life, but rather if they can stand the embarrassment of being seen with me. They are then trying to figure out how much help they think I need (none, both because feminism and because I’m a grown ass adult, thanks).

However, the real answer is much more complicated. It simultaneously colors every moment of my life and actually nothing. It’s the biggest impact and the tiniest challenge. It is everything. It is nothing.

It really is nothing. I am super lucky to have been crippy since birth. I literally know nothing else. Nothing is hard because of my CP. I rarely think about how I’m going to move through the world on my own. I don’t think about making sure I always have a point of balance touching a surface. I don’t have to think about filling cups half way to avoid spillage. I don’t have to think about making sure to stretch out my hips when sitting. I just do it. It is my normal. I don’t feel hindered ever. I just get up, run around the house like crazy because I’ve hit snooze 7 times in the last hour, I take a shower, and start my day. Until I face the social living world, my life is [my] normal. If I lived in a vacuum that consisted solely of myself, I would not understand the concept of disability.

But I don’t live in a vacuum. Us humans are inherently social creatures. Because it’s not a typical way of moving through the world, it colors every single aspect of my life. To pretend that I’m not constantly navigating people’s opinions of my body would be a lie. In social situations, I must think, not only about how to pass for as normative as possible as to ensure the physical safety of others, but how I’m portraying the disability community. I wear not only by own personal struggles very visibly, but also the the public image of 47.9 million impaired people. I know, I know: it seems dramatic. However, most people rarely have personal interaction with PWDs, so I have to put on a good show. I feel responsible to be a Good Cripple, so abled bodies will go “yeah those cripple ain’t so scary.” (apparently this is a world where normative, passing humans think that people who can’t stand or run after you are fear inducing) Basically, everything that I do is in some way either aimed to subvert or support the image of people with disabilities (more on this later, I PROMISE).

Here’s where it gets tricky. My interactions with disability are mainly made up of images and stereotypes that others hold. This, at its root means that disability/ability is purely a social construct set up by expectations of a normative body to reach a certain valued “normal.” Everything else is icky. But, the coloring the construct gives my life bleeds into everything. If you think about my life as a load of laundry, my CP is the red sock. The red sock is small, seemingly insignificant amongst the big sheets and such, but somehow manages to make the entire load pink. My life is inextricably pink, so that even when my CP isn’t an issue--when the red sock is put back in the sock drawer--the laundry remains colored. Over time, you forget if your sheet set is white or pink. You buy matching pink pillow cases and begin to search for matching throw pillows, because pink is less bland than white anyway. The red sock gets tossed or finds a match and you stop blaming it for changing your life. You just become a pink sort of person and you like it.
So while yes, disability is a social construct, it becomes hard to see where my CP stops and my personal normal begins. I forget if my choices are from wanting to challenge notions of ability or if I make them because I, personally want to. At this point though, every fiber of me is pink and the sock is long gone. And I think I’m okay with it being everything in me and also, really, all but forgotten.

Exclusive Inclusivity.

[This post will potentially get me into trouble. I’m sorry 100x. Also I’m being a bit exclusive--the issues that I bring up could also speak very closely to the trans community. I’d like to explore the connection between disability and trans issues further at a later date.]

Today I am tired. Today I am sad. Today I feel like giving up. I'm tired of fighting other people's fights. I'm tired of being afraid to speak up for my community. I'm tired of feeling like personhood belongs to everyone else but my and my community. I'm tired of being patronized and remarked as inspiring or badass. I'm tired of doubting the productivity and usefulness of my body. I'm tired of worrying my body isn't made for living. I'm tired of thinking that the narratives that represent my body are truthful. I'm tired of being barred from participating in my own fight, but continuing to fight for others. I'm tired. I'm tired. I'm tired.

I love media and I love art. Almost as much as I love media, do I love to movement of Internet social justice. I know that is unpopular opinion, but I have to say, without blogs about the rights and placement of diverse minority groups, I may still be a white Midwestern girl without a sliver of understanding of diversity or privilege. Even growing up being one of the most diverse students in my school system, I did not grasp the importance of minority inclusion. (In fact, I stopped acting because I wholly believed there was no place for me in any sort of performance.) Since coming to NYC and having a better awareness of the importance of diversity in media, I decided to pick up performing again. Daily, my facebook feed is filled with articles and videos calling for racial and gender inclusion in media. FUCK YES, MY FRIENDS ROCK, I think. I will join their battle. I have committed myself and my work to be as racially inclusive as my talent pool allows. I want to make work with trans actors and see narratives better suit that community. At the end of the day, I fucking get it. I know how shitty it is to be a minority sometimes, so I will fight for all diversity. I will always be an ally (however gross that word is).

But today I'm finding it hard. This really awesome video has been popping up on my social networking sites lately. https://www.youtube.com/watch?v=SOHaJizzjdg

If you haven't watched it, do it. It's important. While I am so so game for everything it has to say, I'm left a little...cold.

What. About. Me. Such a gross feeling to have. I never want to compete in the Oppression Olympics. I'm a big believer my struggle not negating the struggle of others. I feel so incredibly ashamed to admit that I feel left out. I feel like a whiny brat. BUT moreover, I'm ashamed that I am timid to fight for the disabled community. I'm ashamed that I'm too scared to demand being a part of the conversation. These videos do a great job highlighting the exclusion of all People of Color. Literally all ethnicities are examined, but why focus the diversifying exclusively on color? Why leave out the trans and disabled communities? Why do I fight in solidarity for POC but get ignored entirely when it comes to ability. To be quite honest, while I am IN NO WAY condoning tokenism and stereotyping in the media for POC, as a performer with a disability, I would be over the moon if I got cast as a stereotypical disabled character, because at least an abled bodied actor isn't playing me.

To celebrate shows like Orange Is The New Black and movies like Mad Max: Fury Road for their racial and gender diversity yet ignore their problematic/nonexistent representation of disabled actors is hypocritical and exclusive. To hold theatre and art shows in inaccessible spaces, yet claim the work is diverse and inclusive is hypocritical and exclusive.   For your casting call to advertise diversity, yet type out performers with disabilities is hypocritical and exclusive.

Or is it? Here is where I falter in my manifesto.

The disability community see themselves as a cultural minority--as one would with race. But the normative able bodied perspective of disability is one of impairment. The narratives of my body in the media are one of impairment--not one of culture and existence. So I am confused. Do I get to be a cultural diversity or do I get to be an impairment (problem)? I've been written upon so fiercely that I doubt my ability to belong on the arts, because I've been told I add not colorful culture, but only endless streams of problematics. My own cultural voice has been muted by streams of self doubt while others, with other struggles yell louder and brighter.

The estrangement, narrative creation, and ignorance of disability that both minority and majority groups participate in, alike makes me think that the two maybe aren't that different after all. But then again, maybe inclusion can only exist if there is exclusion. Maybe there is only an 'in' if there is someone on the 'out.' I guess the disabled community is just taking one for the team?

Disability and Sexuality: It's real and we do it.

I would love to begin a dialogue about how the disability experience can be a sexy one.  **It should go without saying that these will likely to contain adult and sex positive content.**

 

An anecdote:

I am in a small coffee shop on my motorized mobility scooter. Such a device takes up space. A lot of space. I sit absentmindedly staring at my iphone, hoping to preoccupy myself with my facebook feed until my latte is prepared. I palpably feel the stares of other other patrons burn laser holes in my back. I look up to see if they have called my name and to make sure I’m not obstructing an aisle (I most certainly am). I press my scooter forward a bit. It makes a hum and an audible clicking sound. Just then I catch the gaze of a young man. I smile at him and his gaze instantly fixes itself on a simple two-line quote painted on the wall. I look in the direction of the quote, read the silly cliche quickly and glance back at the man. He is staring at the quote intently, with such focus he looks like he is painting the quote over and over with his eyes. Then I realize, he is doing everything in his power not to stare at me, the young attractive girl in the power scooter. My coffee is taking forever, as they need to brew a new batch of beans. I return to my phone to further pretend like I don't notice the establishment workers and patrons wishing this weird strange body of mine would leave. By this point I’ve clogged the isle so badly a table has to be shifted to allow others to exit the shop. I pretend not to feel others wishing me to leave. I apologize for being in the way at least nine times. Everyone is kind and smile at my awkward jokes, but I feel those smiles slip to grimaces as I look away. Then, I look over at the man and he is still staring at the quote. I almost yell at him “look, that quote isn’t the next greatest work of philosophy. Wayne Gretzky is not, in fact, the next Nietzsche. You can look at me, because I am a human and I am here!” Just then they call my name. I fumble for my coffee and go to exist. Before I open the door, I look back at the man who I have finally caught the gaze of, lick my lips ever so slightly, purse my lips around the straw, and wink. In almost a comedicly split second, he gasps, jumps, then breathes a sigh and then grins back. I smile and leave to go. I feel eyes on me as I exisist the shop. As I cross the threshold, I think I hear a collective exhale.

******

The disabled experience is one of performance (maybe that’s why I’m doing this whole acting career bullshit). I’m a point of fascination, simply because no one is quite sure how good at functioning as a human I am. The tension my body holds can be painful. Will I or will I not fall over? Will I run into someone? Will I break something? (I don’t even know the answer to these things, yo.) My body and the events that may conspire are one of newness, curiosity, and wonder. At it’s root, everyone wonders how functional I am. How good is the weird body at being a person? How does it function simply? As an actor, I am thankful everyday for this weird body, because it contains so much interest. I, too, am learning new things about it every day. I can (well, whether I like it or not) control a room’s attention with a single footstep. So many actors would kill to be so powerful.

However, disability can turn into a societal blind spot. Due to politically correct shammers, many abled-bodies are too scared to interact with PWD’s at all. I’m positive that you have all heard parents hiss at their children “it’s not polite to stare” or the shush when a child wants an explanation of bodies of difference. Due to the fear of being offensive, all learning that could begin to happen at a young age is cut off, stifled, and muted. We exist in a world right now, of extreme sensitivity. Often that comes from at the expense of both my humanity and the immediacy of what is happening in the moment. The situational tension my body creates is ignored to save face and be polite.

But I’m tired of being polite. I’m tired of the blind spot speaking for my body, because something a lot more deadly will take its place. That deadly thing is media narratives surrounding disability. Those narratives are often of inspiration, tragedy, and the worst: innocence. When the media covers stories about PWD’s the disability is a thing to overcome, or deal with which makes the PWD almost a saintly, holier than thou, figure. When was the last time you saw a PWD in a movie in which the person just gets a coffee and goes to work at a simple office job? You probably haven't, because these don’t exist. Instead, there is a swell of orchestral music in a minor key as the PWD lays in bed and other abled bodied characters talk about ~how hard it is for them~ (this movie will probably win at least one Academy Award). When people don’t interact with me, these narrative are what fill their minds. And lets be real, these narratives are the antithesis of the way I live my life. I am not holy. I am not saintly. I am not inspiring. I am not innocent.

The narrative of innocence is especially damning because it is a narrative of asexuality and allure less existence. (I will admit right now, that there is nothing wrong with asexuality, but for the purpose of this series, I need to draw the line that disability and asexuality are not mutually exclusive or even tied at all.) Disabled bodies are fascinating, but disabled bodies aren’t always very sexy. The question surrounding my body is ‘how well I can exist’ and the first part of primal existence is sexuality. Understanding disabled bodies as sexual beings, is, to me the first step in being aware of disabled people being productive, active members of society. Once people have that one question answered, they are much more apt to understand the capability of the foreign and freaky disabled body.

So I’m on a quest to reclaim this narrative. To do this, I realized that it is much more than just existing. My beautiful, curvy body, is not often sexualized (which from a feminist perspective, is awesome, I suppose), because it is not often seen, due to that pesky blind spot. In order to change me narrative, I have to both direct the gaze and redefine it. Not only can you warmly invite a spectator to stare, by incorporating a suggestive persona. By adding the suggestion of sex, it often causes a question within themselves Additionally, by adding sex into the mixture, the looker and the looked at relationship is skewed. I am normally that one looked at with the understanding that the abled bodied looker has the upper hand status. By skewing this line of status, the relationship becomes communal. There is a presence of togetherness and awareness of one another's’ personhood. And just like that, the blind spot is gone and I am a human.

This series will go onto address more tangible questions, problematic systems, and tips. While this post is incredibly meta, it is the window into my own personal purpose for these investigations. Can't wait to talk more sexy soon!

Solve for X when X equals a Real, Live, Human Body

My first week of living in NYC (also being my first week of college) I had made no friends, went to no parties, drank no alcohol, and kissed no boys.

My first week of living in NYC I went to the gym six times, spent $400 dollar in cabs, and slept for 14 hours each day. I went through 3 pairs of tennis shoes, two boxes of band-aids, and a jumbo tube of Neosporin.

I owned 0 mobility devices.

****

The medical community operates in units, quantities, and metrics of deviations from normalcy. My only interactions with being disabled happened within the medical community until I was 18, so I too, existed to be measured in units of abnormalcy.  My body was deemed a math equation in need of solving.The (ephemeral and totally arbitrary, I now realize) word ‘normal’ drove any and all interactions I had with my body. At 18, I could quantify all the ways in which my body was, well, not….but could not tell you what my body actually was, aside from lacking, deviant, problematic, and abnormal. By the age of seven, I could spout to any of my millions of doctors that “my pyriformis were too tight but my internal lateral rotation was too loose.” To which they would respond with a mirage of horrifying cerebral palsy buzzwords like “blah blah orthotics. Blah casting blah blah. Blah blah blah femural derotations blah blah heel cord lengthening” all to finally conclude with “...and get you walking independently”.

“Walking.” Walking was the key to the illusive promised land of normal. If I walked independently, I could be a full human being, rather than a stream of quantifiable anti-metrics all their therapies seemed to suggest. Even in their concerned warnings of “be careful to stretch or you will end up in a wheelchair” seemed to point me towards the utopia of the normal body. I needed it. I craved it. I knew normal people walk. Assistive devices were a result of failure and weakness.

But failure and weakness against what? I wasn’t sure there was anything else on the other side of the equal sign of my bodily equation.

****

My first walk to my first college class was 5 blocks, 6 rest breaks, 4 falls, and two bloody wounds away (this is not including the countless stumbles, balance checks, and concerned stares from strangers, because I’m not entirely sure I can count that high).

While most of my friends measured their first week of college in new friends, hook ups, bottles of shitty vodka, and free swag accumulated, I measured my first week in bandages, ice packs, amount of money I could spend on cabs and still eat, minutes working myself up to facing thousands of hazards, number of seconds I could stand before feeling like my legs were going to give out, and finally stares of worry and concern for my safety. I was beginning to lose count. I couldn’t keep track of who was winning--my body or me. I was beginning to realize that I spent my life learning how to solve for X when = walking = normalcy, but that my life was a no sum game with continuously added factors.

No matter how hard I tried, walking independently into the kingdom of normalcy wasn’t going to happen. Not because I couldn’t walk, but because normalcy didn’t exist. I was tired, in killer pain, and no longer working for a solution. I realized my body was and is not normative and to deny that would be submitting to my worth to numbers placed on me by doctors who told me what I could not be, rather than what I could. No matter how much I stretch, lift weights, and endurance build, I would be measuring against a negative/imaginary (admittedly, i’m bad at math so this metaphor must come to an end) set of values.

So I caved. I bought a fucking mobility scooter. It was wheel-legs or go back to Ohio and count more steps and failures.

****

But just because my walking isn't normative, doesn't mean my life can't be. Counting steps, obstacles, and falls is not a way no live a normal and productive life. When I have my wheel-legs, I no longer needed to count those things. I was able to count instead nights out, boys kissed, artistic successes, new friendships, and adventures. I no longer go outside and brace myself for impact, rather than experiencing a moment. Life is a lot more interesting than sitting in class counting the minutes until the you have to count the steps until the minutes where you don't have to navigate hazards.

When we are teaching young kids to think about their disabled bodies, the question shouldn't be 'how good are you at walking?' but rather, 'how good are you at living?' Sometimes those answers can be one in the same, but for me they were not, and that's okay. I would not be able to make theatre, see all parts of the city, experience night life with friends, and be a face of the disabled community that is out there living a productive, fast paced life if I was stuck thinking about how to be normal. Being passably normal takes up an abnormal amount of brain space.