Wednesday, August 12, 2015

Authority and Identity

     My friend works in the mental heath field.  She is in charge of her patients, and takes responsibility for their treatment and care.   Her choices effect the lives of those around her, and fortunately she is wise and good of heart.  Making these decisions has shaped her wisdom and compassion giving her a title and an operation in the world which she continues to aggrandize with goals of graduate school and doctorship.  She’s athletic, and been practicing a disciplined yoga routine.  Being a psychology major, of course she wanted to go to the Stanford prison experiment movie playing at the Ritz movie theather.  I had nothing better to do, so I was down to see it with her. 

     I keep having these mental breakdowns at night.  My attendant leaves at five pm, the door shuts and locks.  Unless someone is free to hangout, I am now stuck for the rest of the night alone in my apartment.  This doesn’t always bother me, but currently my power wheelchair isn’t working and I can’t take the scooter on the bus without people making comments “Why don’t you go to driving school?” or angrily shouting at me to hurry the f^ck up.  I can’t turn my head to navigate because of my fusion, and I can’t turn the scooter into the seat area for wheelchairs because it’s just physically impossible.  I am lucky that I have the option though to even try, before I got the scooter for Christmas there was no other alternative when my chair breaks.  I try to keep myself busy when I’m stuck inside: write songs, talk to people online, watch movies with the brightness turned down because it affects my vision and headaches.  But a lot of the time I lose control and totally become nothing.  My eyes focus off and I’m still conscious and sitting up but I’m not here.  I go into a catatonic state of depression and depersonalization; I don’t move, I don’t think, it’s just a lucid surrender.  People ask why I didn’t answer their texts later I tell them I was sleeping.  It usually lasts until there’s someone around again who can help me manage myself and my surroundings.

     So my friend came over last night after my attendant left and we made the plan to go get dinner and see the movie.  She asked me which restaurant I wanted to go to, I told her I didn’t care because she was driving so it’s her call.  We ended up going to a Cosi and getting the most watered down health sodas with some pretty good soup.  She got a cookie and I got the James-and-the-giant-peach sequel size of an apple.  There weren’t any singing dancing claymation insects on it, unfortunately.  We went to the Ritz, and she helped me get around and into the seat.  In the back row I noticed on the other side of the theather was a man lighting a lighter with his shoes and socks removed and repeatedly burning the bottoms of his bare feet.  I thought maybe I should say something with the flame being so close to the fabric on the seats, but didn’t.   The movie started and I put on my sunglasses.

     Most people know of the Dr. Zimbardo’s Stanford prison experiment.  The psychology doctor on a totalitarian power-trip.  His experiment on power, personality, authority and prison behavior, that was really just a simulation of how cruel college fraternity kids can be to eachother. A bunch of young boys volunteered to be subjects, with a coin flip half were given the role as “prison guards” and the other half the role as “prisoners.”  The only difference between giving the kids the title of “prison guard” and three greek letters was that they had no codes to follow as guards.  Only rules to create.  They chose to be abusive, and the prisoners were harassed, punished without crime, and robbed of all personal freedom.  Within seven days they had to just down the experiment that was supposed to last for weeks because the “prisoners” had broken down mentally, many of them needing therapy to recover afterwards. 

     The movie overdramatized it a lot, in the experiment the prisoners were not physically harmed, but in the film they were thrown around violently and beaten with nightsticks because physical abuse is far easier for people to understand than psychological.  It’s a movie for American audiences so it needs visuals to be intense.  I saw in the previews they are doing a movie on the Milgram shock experiments, I wonder if they’ll make the electric shocks real in that just for the dramatic effect. The weirdo in the seat on the other side kept massaging his feet which he had up on the seat in front of him, I think he might have had a mental illness.   As I was watching the movie and the scenes where the prisoners lost it psychologically in different ways I realized I’d been through all of those stages myself with my disability.

-The deprivation of identity: you are not who you were when able-bodied.
-The distress of rebellion: the harder you fight, the more it hurts.
-The loss of control and the abuse of the controllers.

My controllers or “prison guards” are as followed:

1.           My disability.  It tells my body what it can and can’t most, most of it cants.  It puts me in severe amounts of physical discomfort pain that I have no choice to get of aside from heavy narcotics which is its own type of torture.  The quadriparesis weakness I have no choice but to accept.    
2.           My government.  It tells I can’t have a substantial income without losing my insurance and my attendant care services.  It tells me I must stay welfare poor, living in a ghetto in subsidized housing.  Of course I feel like a prisoner, there are bars on my windows.  It tells me that if I am ever to try to go to college, have a career like those I admire, I will be screwing myself over.  Because I am chronically ill and disabled, I must not be anyone of authority to those who are not disabled.  I am not allowed to marry a person with an income greater than mine without losing what little independence and freedom I have. 
3.           My society.   It tells me where I can and can’t go.  It ignores me and people like me with barriers of architecture, keeping the minds of people ignorant and inaccessible. 

     With acknowledging these controllers in my life I can accept them even less.  The Stanford experiment was shut down after seven days because it was deemed as inhumane.  This is a lifetime of imprisonment without crime for many people unless it is changed by those in power.  The doctors, the politicians, the communities.  They need compassion; they need to make the choice to be compassionate.  Otherwise they are just as abusive as those prison guards, who in the end repented and felt horrible for their actions.  I can beg until I break for change, but I cannot make that happen.   I am not a criminal, but I do not know who I fully am because I am not given the authority to be that person.  This is why I’m crazy.




        

Sunday, April 13, 2014

Friends, Freaks, and FREE Funnel Cake!


So I got a facebook message from my friend Clark Matthews, that was not exactly but something like “Hey, my friend Bethany is giving a talk to students about people with disabilities and they need subjects on a Q and A panel, wanna come?”  Looking for a better way to spend my Saturday than on facebook messenger, I said “Mkay”.  So then yesterday morning Clark picked me up at my place, along with his friend “Mia Gimp”, or so is her alias for pornography.  Mia has cerebral palsy, is a professional dancer, and also a recently accredited adult film star.  Clark is a director and photographer for disability porn film “Krutch”, although he has no interest in filming porn at all.

My first question was “So what are we doing at this event?”  Actually my first question was “Why is there a toy octopus on the sidewalk?  That’s a strange thing to see in the ghetto.” Like syringe or used condom I’d expect.  But a toy octopus?  That’s strange.  But the answer to my second question was

“Bethany teaches a grad school class on disability sexuality.  We get to answer questions grad students have about our sex lives.”

This answer came after a bunch of evil laughter.

We arrived at Widener University, the only place where students can actually major in the area of “Sex Therapy”.  The first thing I noticed was that every student was  female.  I don’t stereotype, I just observe, and make statistical inferences.  To women sex is a subject, to men it’s a sport.  There were two ladies in the back that were very touchy-feely with each-other. Independent study right there.

So Bethany has a service dog that’s half pug half Chihuahua names Sully.  She also has Osteogenesis Imperfecta like my boyfriend Erik, and just like Erik she’s into women as well.  She has a wife and lives in Georgia, which being below the bible belt is the last place I’d expect to find someone as colorful and charactered as her.  She travels to Pennsylvania specifically for the purpose of teaching this course on disabled sexuality. 

So I’m one of those people that under pressure either doesn’t say anything, or says everything to fill the pressure of empty silent space.  I don’t know what I’ll be quoted on, but it definitely should not be applied to the disabled population.  Not every disabled person watches people get shot outside their window, hangs out naked with anonymous disabled lesbian friends, masturbates to get over headaches, and wants to get a prosthetic penis with a funnel just so they can pee standing up, cause bending hurts and is a fall risk.  Most of them don’t have dreams of performing burlesque dance, and want to contribute to the cause of disabled porn.  That’s why it was me, Mia, and Clark on that panel.  After Q & A they screened Clark’s movie “Krutch”.  Bethany asked Mia if it was weird watching herself featured in a porn in front of an audience. She told us about the time they were watching it in a diner and some random person came up and was like “Woah!  You’re watching a porn! Damn that naked chic is hot.”  And she got to be like
“Oh that’s me.”
And he didn’t believe her.  Lol.

After the grilling, me and Mia went off around the college campus.  We crashed a carnival that was going on.  There was free funnel cake, and strange students dressed as Japanese cartoon culture miss muffets.  There was also empananas, and a “wishing tree” students were writing wishes on sticky notes and putting them onto.
Mia wrote:
I wish to wish a wish.

Mine was a little more cheesycorned.  But I meant it.  I want success for myself and help for others I care about.  The empananas were delicious.

We went back for the second part of the class where Mia’s soul-sister Leslie was skyped in to give a talk on the history of sideshow and disabled burlesque.  Leslie is a burlesque dancer in the carnival, something I’ve had a taste experience of, and am wanting to be a part of someday.  Leslie with her fire red hair and marvel visage kind of reminds me of the Uma Therman Poison Ivy from batman, but if she were a burlesque dancer, with a better background story than a botany lab accident.  I don’t know what happened to her, but she said she has burns on over 70% of her body.  She’s freaking stunning.  Leslie went on a detailed account of the lives of some famous icons in the burlesque sideshow world.  It kind of felt like comic book characters in real life.  Heros of the weirdo world.  The weirdest part was thinking, “Wow, we’re the modern generation of them.”  Like knowing your lineage, not by blood, but by spirit.

Leslie showed a photo slideshow of her dancing a dance her and a good friend had choreographed together.  The friend was a burlesque performer with multiple amputated limbs that she would take off during the burlesque performance.  She was not pictured in the sideshow, because she had committed suicide.  Bethany began to cry at this part of the presentation, she informed us later just how many people in their family of disabled supporters have taken their lives.  I cried too.  Not only for those who had passed, but because I think all the time how relieving it would be to just die and not suffer anymore with this shit.  There’s no easy way out.

I got to hang out with Bethany and Mia in a hotel room.  Our friend Millie showed up, and we had Chinese food and girl talk times.  It’s funny because the level of conversation went from parents not understanding, to belly-dancing, to calming down Sully who got into a jilted barking love affair with a dog in the room next door.  My fortune cookie told me that it was a good time for making new friends.  First time in my life I’ve agreed with a processed dessert. I don’t know what this world has in store for me, with Chiari, and all the sudden complications of life.  But I’m glad that there’s going to be friends, naked dancing, sideshow freaks, and family.

Thanks everyone; can’t wait to see yous againJ

Tuesday, April 8, 2014

My choice: My wawa


So as of yesterday I was deemed the official “Social Media Manager” at the Independence Edge Art Studio.  That’s right, they have finally found a use for my otherwise counter-productive Facebook addiction. My title means that I get to post on behalf of the studio updates and notifications.  I will promote and perform the public outreach for stuff we do down in the dungeon.  They are also letting me run my event idea of  “Nude Figure Drawing” sessions.  I plan to go all hipster-spiff with this, there will be live acoustic music or poetry and dessert along with naked people.  Vicki my best friend and roommate, whose also one of the director of Edge says that we can’t make dessert legally because if someone gets sick we could be sued.  So I’m on the look out for a bakery to cater or sell stuff instead, or maybe a lawyer that can bake.

Speaking of baked things, I’m in a relationship now with Erik (my friend I performed at carnivolution with, the one that got electrocuted with the pickle).  It’s weird how two weird things together are not weird at all.  I like it a lot.  I told myself I wasn’t going to get into a relationship with anyone for awhile; I have a lot of issues with people from the past I have a hard time letting go of.  But true happiness is about finding it in the present, and true pain is focusing on happiness in the past.  It’s just like how I’ve had to deal with Chiari, I had to move on from a love of running and biochemistry to a love of music art and sideshow performances.  Sometimes when I’m drunk I’ll still try to do chemistry problems, but sober it makes me cry, more so than an ex boyfriend could.  The pain in my head always reminds me why we broke up.  Oh, and I dropped out of college again.  I don’t think I’ll ever be cut out for that world. I don’t fit into systems, and I can’t perform at someone else’s pace.  I was getting straight A’s at Temple in Media Productions, but I didn’t feel like I was doing anything that made me happy, or giving me the life I wanted to live.  I was spending all my time stressing out my body and brain on things like 8 hours of reading the Illiad, which gave me no time for friends or music or any of the things that make it worth waking up in the morning.  This made my headaches and other symptoms more brutal and forced me to go out into the snow everyday in my power-chair, catching cold after cold virus, getting stuck in snow banks and having to be dug out by strangers in the ghetto, and having to drive my chair in the middle of the streets because the sidewalks weren’t shoveled.  My chair began to break, and so did my sanity after one of my friends from our Sick and Sexy Society group died suddenly from pneumonia.  It put a lot into perspective for me.  Since then I’ve been playing guitar everyday, working on only the projects I want to, and making it a point to tell everyone that I love that I love them.  I don’t feel like I’ve failed, I feel like I’m finding my place in the world.  Erik says you don’t go to art college to graduate anyway, he went to UArts and has a bunch of experience with learning vs. creativity.  I like learning from those who don’t teach.

It’s rainy and cold out today, but it’s a beautiful day.  I can just stay in, listen to my favorite Pandora station, play with Bunny Savage Jr. the cat, and work on my world.

Tuesday, February 11, 2014

Still alive, never still.


Haven’t written in here for awhile, not because I have nothing to write about, but rather because far too much has happened.  Things I don’t know if I can even express on a public domain, and because I believe people need their private lives, I wont say too much. 

The band I had is over.  It outlived my relationship to guitarist Jesse Draham by about nine months.  We have not directly spoken in about three. 

There was another person that I began dating in the summer.  He is out of my life as well now.  I am greatful for the time we shared, and the lessons that he taught me. 

Till death do us unite.

I am teaching myself guitar.  I will no longer have a band, I will be a band.  I’m learning audio engineering at school, and exploring the synth and drum machine self-reliant solo route of music.  I’ve always relied on someone else to support me.  It’s time I take responsibility of my life and of my music.  Music is life after all.

I will write more later, I just wanted to remind everyone that I am still here…long live Great Neck!

-Nom