What if you wake up and I tell you: “hey you are completely paralyzed and guess what, from now on you’d have to call me if you need your ass clean. I’ll teach you to brush your teeth and some other stuff here, but if you wanna get to do stuff on your own again, you’ll have to go to a bootcamp, not this rehab.” Would you go to the bootcamp?
After my spinal cord injury, when I was 16 years old, due to an accident in 1993, I became paralyzed from my neck down, with some arm movement left. I did some traditional rehab, in a traditional rehab hospital (in Philadelphia,) with traditional physical and occupational therapists helping me get the expected functionality for my injury level at the cervical 6 (neck).
According to the chart on the wall of the rehab “gym,” the expectations for my level were pretty minimal and having to glance at this chart every single morning at the gym, became my main reminder that from now on I will be able to do only 5 things for myself, the rest ohhhhhh i guess someone else will have to do it…so, I thought.
It read something like this:
“Daily tasks for a cervical 6 Injury: Independence with eating, drinking, face washing, brushing of teeth, hair care after assistance in setting up specialized equipment.”
Was that all!? Yes, that’s all what they expect from us cervical sixers (I just made that up..sixer, I mean) at the rehab…the place where everyone ends up after a spinal cord injury.
I learned to do those 5 things for myself with a bunch of bloody expensive specialized equipment (did I say huge too). I returned to Puerto Rico after 5 months in this rehab.
Recently after arriving in Puerto Rico, my father traveled to the US in search of a place for me to get more rehabilitation, so he bumped into a center called Accessible Alternatives in Orlando, FL. He came back to Puerto Rico exited about the idea of taking me there after leaning all I would be able to do if I were to go.
Accessible Alternatives had a bootcamp-style approach to learning to live independently! Their main philosophy behind their training (not rehab, training!) was to drop any kind of expectation. That chart that I mention at the beginning, was to never be look at from now on. Now the expectations of me were much higher–endless. There was “no, I can’t” as an answer, said Tim, my trainer on our first encounter.
In this center I was not a patient anymore, I was a client, plus there were no physical or occupational therapist, there were trainers with no background in those disciplines. And that was on purpose! They were not trained to look at a spine chart and “assess” what were the things that I, as a cervical sixer, would be able to achieve. Their vision would not be blurred by that and mine either.
Another super cool aspect of their training approach was to not depend on specialized equipment for anything. They basically trained me to be a DIY-thinker! Why? Well, first, all these equipment is super expensive. Second, and most important, was the idea that training us to be DIY-thinkers was crucial in order to survive in a society that was not going to adapt to our needs, so I had to play with what was already there, at my “reach.”
They put me in a 2 bedroom apartment with another injured fellow. They would wake us up at 6 am to start the training. We would take our own clothes off, transfer to the shower chair, shower the whole body on our own, go back to get dry in bed, put underwear and pants on, transfer to the wheelchair, dress upper body, groom, prepare meals and then spend the rest of the day alone with no help. No one to help us grab juice from the refrigerator, reach the remote control, grab the phone. Alone! But with the best tool, our ability to THINK! I spent 8 month figuring stuff out and I left with the ability to live in an apartment on my own. Did this mean I could go to any college I wanted to and live on my own? YES!
I got trained to survive in this society and live independently! And I owe this to them–training me to THINK how to improvise with day to day artifacts, like stretching a hanger to reach things, grabbing a pen with my bare hand and write, tangling a fork between my finger to eat. They didn’t teach me these things. I was able to figure it out because they forced me to THINK! To never say I can’t before spending a good amount of time seriously thinking.
After these 8 months, I went back to Puerto Rico, started college in 1995 and in ’97 I joined an international exchange program. So I grabbed my 3 wheelchairs and 2 suitcases and took off to California. My mother came with me to help me settle and left after a couple of weeks. And there I was: by myself ready to take over my life with the tools I had received during my bootcamp!
My first “now what” came pretty fast one night when trying to finish an assignment. I dropped the paper I was writing on, it was 4am and I needed to turn it in at 9, and had a few more details to take care of in that paper that was now on the floor. Usually I would have stretch a hanger to grab whatever I drop on the floor, find a way to hook it and voila! But this time it was a flat paper–the hanger was not gonna make it. So, I put a piece of tape on my wheel and rolled over the paper, the paper got stuck to the tape, so I kept rolling until the wheel brought the paper to my reach! When I all of a sudden had the paper on my hands, I got happy tears and a feeling of empowerment hard to describe! I immediately thought of Tim (my trainer) telling me, “I don’t want to hear I can’t…figure it out!” and i had just done exactly that. The rest is history!
If there is something I need to share with a newly injured person or those who are having a super difficult time living with a spinal cord injury is that, in order to get out and into the world, you need to feel empowered again. Take on the wheel of your life again. Figure shit out, think on your own again! And more important than anything else: don’t let your physical paralysis become a mental one!
This Is Personal, was part of a discussion on “queer economy” at THEOFFCENTER.ORG.
By Cristina Carrasquillo
“no reflex on knees”
“no sensation on skin”
“no movement”
“…do you remember”
I was about to turn 17 when the car brutally flipped out of control and violently threw my body out the windshield. I flew 27 feet and landed on my neck. Still alive and in and out of consciousness, I heard a whisper say: you flew like wonder women!
Wonder women! I took that to heart. Here I am 18 years later taking on life like a wonder woman. Not the fictional character, but the real one, me! With a severe physical paralysis and after getting the mental and emotional fuck up straight, my life turned into a constant challenge and mocking it became my weapon of choice.
It took me four years of trial and error until I was able to use my new body enough to live independently. That’s when I got my shit together, moved to another country (by myself) with 3 wheelchairs, two suitcases and zero English. And against all odds, I made it: I graduated from college, grad school and worked full time jobs for seven years. Now I am a performer and I’m ready show you how a physical impairment creates a heroina!
At this point in my life, challenges have become a necessity, especially to understand my nature and also to keep my heart pumping. Modesty apart, that’s a pretty darn cool way to live life!
To me being “queer” is to be different, to be extremely unique and creative (with your art, but also with you life), and perhaps be to be perceived as odd by most people. As much as I hate categories, I do consider my self and my art as queer. I have a lot to tell and, most likely, it may push your comfort zone. It may be just that, odd.
However, it is a challenge to be queer in this society and even more, in this about-to-collapse economy. Most of us queer folks live on the edge, financially, emotionally, physically, mentally, to name a few.
So I like to define “queer economy” as the way in which we reach emotional, physical, mental and financial sustainability in our lives against all odds.
Jesse asked me a few questions to trigger some thoughts. Thanks J! And I have to say that I feel the most comfortable talking about being “broke” (!?) and how I manage to stay afloat.
Living in a queer economy goes beyond the financial aspect to me. And the only way in which I am broke is financially—and thankfully that doesn’t keep me awake at night. I still feel fabulous, though. Based on my experience, I don’t have to be rich to feel fabulous.
I feel fabulous, for example, when I find ways to avoid depending on and fuelling an economic system that’s unjust to the core. My way? Simplicity. If there is something that goes against a harsh capitalist economy is that, simplicity! Creating more, consuming less should be our mantra. Ultimately, we make art, we love creating stuff so sculpting a beautiful life for us should be our first challenging piece of art.
This capitalist system is repulsive to me. It is a system that will (maybe not in my lifetime) become obsolete. “The more I have, the less you will have?” That is not fucking ok! I’m pessimistic in my thoughts, but optimistic in my heart that other models of economy that prioritize people’s needs will ultimately win over this suffocating capitalist one.
Other countries (and I am not talking about western Europe), take Latin America, are string up a new era in which principles of Cooperativism and Socialism are being applied to their constitutions. These governments are strongly supported by the people, especially the poor, because their main goal is to revolutionize a system in order to eliminate poverty and illiteracy. Unfortunately, we just don’t hear this in the news…wonder why?
Anyway, venting aside, a little anecdote that also makes me feel fab: As soon as I get out of my home, I have an audience unexpectedly awaiting me. On my sidewalk, in the train station, in the train ride…you name it. People are fascinated or scared or surprised by someone using a wheelchair to move around. Regardless of how my audience reacts to my “piece,” I have to say they make me feel fabulous! I feel fab because I’ve come to peace with what I used to call harassment, insensitivity, condescendence and thoughtlessness. In reality this 24/7 mundane acts become “performance” merely due to human ignorance and lack of tact in its most pure form. It is indeed fabulous to be under my skin and body and still feel compassion for those around me (or around differently-able bodies, for that matter) rather than hatred.
At last I have to say that I find balance when I know I have a community. When I can hear “yeah, I hear you. I understand. You are in deep shit. This is how I deal with it.” That definitely is the main floating devise I have, my community, those that know my name and what I am made out of.
Me second floating devise: LIGHTS UP! Don’t fear to stare. I’m performing for you. I won’t see you. If you listen carefully, you’ll hear stories of trauma, frustrations, insecurities, discrimination, but better yet, you’ll hear stories of empowerment, survival, confidence, strength and pure joy.
I am interested to hear your comments about this internationally overshadowed social justice struggle in my island. The assassination of Ojeda Rios by the FBI was one of our most painful tragedies and one more case of the historical FBI illegal persecution against leaders and members of the independence movement.
Have you heard about this? If not, blame the media for not letting you know that this country still holds a colony and has never ever been held accountable for it! Hope to read some comments.
The video begins with Filiberto Ojeda Rios talking in Spanish and the rest of the video is in English.
by Maria R. Palacios
copyright 2007
The normal in me can tell you
about distracted bones
that refused to learn
about motion,
about fingers that speak
a language of tangible deviations
and feet that fell asleep
before their time.
The normal in me
is the underexposed flesh
half shown to you
as you explore my imperfections
pretending that your hands are deaf
to the whisper of my scars.
My normality
has been redecorated
as an unusual
biological masterpiece,
a human canvas
displayed in front of you
the artist who values
the rare
the sensual
the woman.
10 years later.
As the thought of cleaning things up from the past crossed your mind, the painting on the wall crossed your eyes
And made you wonder
Why was it so unclear, when he gave it to you,
An interpretation of this abstract piece of art.
Now after your wounds are healed and after appreciating it for many years,
You find a peculiar comfort in it.
You don’t know whether your interpretation of it was his actual and conscious muse,
But that piece of art goes hand in hand with the story of you two.
If he never realized the story, it is still comforting for you how in the very deep of his heart he felt the story all along.
Then as the thought of cleaning up things from your past crossed your mind, you understood how the bloody spot,
the cloudy story,
the touch of the beast,
the weak woman and
the obscure open door,
were his guilt screaming a way out.
My sister came to visit us at the beginning of January. Enjoy the photos by cliking on this one.
Valerie and Bergen playing together for the first time at Amnesia and also the last show Z.O.N.K will have for a while cuz uncle berg is leaving to bike around the ¡Mundo!
Lots of friends joined the audience and I title myself as the VIP-front seat PROFESSIONAL video/photo taker!
Valerie Orth Band
Z.O.N.K (Bergen’s band) played afterward and they rock the place too!
Photos!
Thanks to Valerie and Z.O.N.K for such great performances!
The cold floor on my feet | The skin on the feet is very sensitive | The wood part of the room is not as cold as the tiles in the bathroom | I am walking on the tip of my toes straight to the tub | Turn the water on and feel the temperature | When it feels comfortable, turn the shower | The water on my head and on my shoulders put me to sleep again | It is hard to wake up and move | Just stand there | It feels soothing | I start drying and dressing | Maybe I eat | Today is sister’s day | We cut our hair together | Where you with me that morning or did you meet me later |
The day is ending and memory is fading | It is slower | I am sleeping on her couch | Good bye aunt | Have some ice cream | It’s 6 o’clock | …
Your shirt is the white and blue with stripes long sleeve polo | I love that shirt | Why don’t you wear it more often | I take a deep breath | you ask if it hurts | It probably hurts unless they numbed me |
“no reflex on feet”
“no sensation on skin”
“no movement”
“what happened”
You are wearing that pretty shirt, you look sad | Give me some of that coke | I think you really love me | Dad says I have to get taken care of far from here | You are coming with me | You love me | I love you too | Do you remember | …
The days here have been amazingly beautiful with some chilly days too, but for the most part, it has been awesome to be free during these couple of days of heat that we get in SF every year. I have been having a very relaxing time hanging out wherever and taking photos of whatever.
If you click on the photo above, you can see more. The sun was too bright, so the photos came out a bit glary, but just an idea of the chill time you are missing if you don’t come visit me before I go back to the labor force.
puerto rico in san pancho 