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

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.